Just like my refrigerator which has finally gone caput after intermittantly working and not, my body has persisted in giving signals which cannot be overlooked forever. Finally, finally there has been a break in the case! I received a call … Continue reading
If a doctor forced you to decide whether to keep your arm or your leg which would you choose? This is a ridiculous scenario, but figuritively speaking, chronically ill patients are expected to do that on a regular basis, sacrificing one thing they need in order to have another they need just as much.
I found this out first-hand when I began receiving services through SOURCE, a Medicaid waiver program that provides personal assistant services to people with disabilities who need help at home. When I first began with them I was told that I had to utilize a primary care doctor off a list they provided but that I could also keep any other doctors I wanted to keep.
The primary care doctor I had chosen when Emory sent me the certified letter kicking me out was somebody affiliated with Piedmont Hospital and although I wasn’t sure whether she was going to be able to help me get the necessary referrals to out of town specialists a staff person from her office called last week to say that she was in fact working on a referral to Vanderbilt and just to give her some time to get it facilitated.
She was unable (because Piedmont doesn’t accept direct Medicaid payment) and unwilling (because she didn’t want to be inundated with Medicaid Patient referrals) to sign up to get on the SOURCE list but I had been told by the SOURCE caseworker that I could have one doctor through their list and also keep her if I chose.
Today I went to the appointment with the SOURCE doctor I’d picked out (whom I will call Dr. HA). Dr. HA had wavy brown shoulder-length hair and was a little taller than I was; maybe about 5 ft 4 or 5.5 and of medium build.
She seemed nice but I could see fairly quickly that there were going to be numerous problems.
First, she wanted the records from Emory. This was a non-starter right off the bat and it seemed there was no way to make it out of this minefield unscathed. She told me that she had privileges at Emory Midtown (where Dr. H, my Pulmonologist works) as well as at Piedmont, and (strike 2) that “Emory’s good.” Uhhhh…Not so much, I thought.
I told her I’d been going there for 13 years and that it used to be but this past year something has changed, but she wouldn’t leave it at that. This turned into a game of 20 questions. She wanted to know what the political stuff was and on, and on. I reluctantly told her that there are numerous inaccuracies in my medical record and that two very important consults out of town had been sabotaged at the last minute, so I was not comfortable signing a blanket release for that medical record to any doctor, but that I would give her the objective information from test results, vital signs, etc.
“I won’t judge” she said Dr. HA in her thick Russian accent. “I can just go in and pull it since I am affilliated with them.” She then said she would also like the information on my chronically elevated liver enzymes.
“No, the clinical notes are awful. I’d rather you not. I would rather just close the book on it and not re-open any of that. I don’t want this stuff passed on from doctor to doctor.”
“If you don’t want me to look I won’t look” continued Dr. HA.
I’d heard this song and dance before and no longer trusted it. Signing such a release would have given her the legal right to access the electronic record as a whole and it was too big a risk. “I can give you the objective stuff. I have some of it with me and the data on my liver enzymes I can get for you if you need those”, I responded.
This doctor utilizes students from the Carribean and often 3 or 4 heads are better than one, and could ultimately be helpful but these were not residents but medical students so they were not as far along in their training as I’d originally thought. They all looked of West Indian descent with dark straight hair and dark skin.
One woman typed my medical history while another checked my vital signs and… checked my reflexes (ick). This more irritated me than scared me this time. I resisted the urge to throw that hammer across the room, LOL. As usual I had spasticity/hyperreflexia in my legs. She did not check the reflexes in my arms; just strength.
When it came up as to whether I wanted her to be my primary care doctor I explained that yes, for Source, and that Dr. P was already working on referring me to Vanderbilt and that I didn’t want to further delay that. This was a sticking point with her and she also seemed overwhelmed with the referrals I needed. She asked why Emory couldn’t just have me seen in their Movement Disorder clinic at which point I had to further explain that the Chief Medical Officer had kicked me out and then she wanted to know why, yada, yada…and I said that besides, I had never been referred there even before all that happened and that that was a big part of my problem; that the proper referrals to specialty clinics had not been acted upon when they should have been and with all the politicization of my case it would not really be in my best interest to go to their Movement Disorder clinic now even if I had not been barred from going as it is doubtful that I would get a fair and unbiased evaluation.
I went on to explain that I have rescheduled the one at UF Movement Disorder Clinic for January but that I need a doctor to sign off on the necessary forms for my oxygen concentrator to be carried on the plane and the one for the non-profit to cover my travel expenses.
“Really you need to have a neurologist to do all those things” said Dr. HA. “I feel it would be better for me to have back-up in case there ever was a neurological problem I don’t know how to handle.”
“I had two; one in Sleep Medicine who treated my Myoclonus and one in General Neurology” (giving her their names), “but Administration came in and forbid them to keep seeing me. I trusted them because they were going to support me through this process, but I had a really bad experience with a male neurologist and after that I don’t know if I can go to another one here in Atlanta. I looked and there was nobody of the ones available that I was that impressed with, besides, that male neurologist in the Emergency room was out-and-out abusive. I just really am hesitant after that.”
“Did you report it?” she asked?
“Well I know one at Piedmont who’s good…Dr. _____” (I will call this one Dr. HAA to avoid a mix-up as there are lots of these doctors who’s names start with H), I’d heard of him and can’t remember what his reviews said, but still…he’s a male neurologist. The thought of going through this embarrassing explanation as to what happened at Emory with yet one more Atlanta doctor, much less a male neurologist, was more than I could stand.
The primary care doctor, Dr. HA had me describe my Myoclonus, then looked up something on her phone. “Tramadol could lower your seizure threshold”, she said glancing over at me.
“I know, but the neurologists I was seeing didn’t think my Myoclonus was seizure-related, they thought it was due to the underlying disease-process, so I don’t think that is an issue. Besides, I’d already tested going off it for a few weeks and it made no difference in my Myoclonus at all. It’s much better on the 1000 Mgs of Keppra than it used to be before I was on it. I used to be up all night with it until 7 AM.”
The two students stared ahead making slightly uncomfortable faces at her apparent lack of clinical knowledge regarding the several different etiologies of Myoclonus. I noted it as well.
“Dr. P is in the process of setting up the referral to Vanderbilt. I’ve waited 7 months for treatment already and I really don’t want to delay it any longer. The neurologist may or may not even do that.”
“Let me speak with your caseworker” replied Dr. HA. “I don’t know why she told you to keep both of us. That doesn’t sound quite right for me to be for Source and she wouldn’t sign up but she will get paid to see you too when I went through the paperwork to get on their list.”
I handed her the caseworker’s business card and she dialed the number. “Ms. N? This is Dr. HA”, she introduced herself. “Yes, I’m here with Ms. Carlington in the office. She has told me that she was told she could see a doctor through SOURCE and also this one that she’s already established with who is not with SOURCE. I don’t think that’s right that she sees her and also me. Why did you tell her that? I don’t really appreciate it.”
Both me and the two female students in the room looked at one another awkwardly.
She put the caseworker on speaker. “I just figured she could do everything dealing with the neurological referrals” said the caseworker, “since she was already working on the referral. We really just need a doctor on record and since she was unable to get on the list I told the client to just pick one on the list for our purposes in addition.” And then speaking to me “Ms. Carlington, I guess you’ll just have to take this one on faith so that you don’t lose the home help. I don’t know what else to tell you if she won’t do it along with Dr. P.”
My heart sank “I’m beginning to think this is becoming more trouble than it’s worth. She wants me to see a new neurologist for the referral rather than her to do it if I switch to her. I don’t know any neurologist I trust and who knows if the new one would even give the referral. This could go on forever and I might never get to Vanderbilt at this rate.”I told her I just didn’t know what to do at this point, as I have had to change way too many doctors in a short period of time.
Dr. HA thanked her for speaking with her. I started to ask the caseworker if she’d be in the office when I got home so I could call her later, but she’d already gotten off the phone.
Dr. HA wrote me a refill of my Tradadol (but just 1 month’s worth) and told me that she’d give me a month to decide what I wanted to do, that she wouldn’t bother making copies of my records I’d brought with me until she knew I was coming back, then I followed her and the students back out into the hallway.
I need the referral to Vanderbilt but I also need the personal assistant. It’s not an either or situation. I need both equally. This is a real double-bind, but it seems if I get rid of Dr. P she won’t be too thrilled after she’s gone to the trouble of working on the referral to Vanderbilt, and she’s a sure thing and will save me time if she does it.
This newer primary care doctor is a question mark at best, and whether a new neurologist she recommends will follow through with the referral (if I can even get up the guts to see a local neurologist) is a total crapshoot since she doesn’t want to do it herself. It also makes me uneasy that she’s invloved with Emory on any level. Somehow in all these people’s self-interest I, the patient got left behind.
So many don’t understand the magnitude of my loss. I had two good female neurologists and they were ripped away from me when I needed them most. This is killing me. I need time to grieve. All this not being seen or heard and being required to fit into other people’s boxes I don’t fit just makes my heart ache and all I want to do is withdraw from everyone. Step out on faith? I can’t; not again for the umpteenth time. I need to eat what I like, keep to my routines, pace myself and not make too many changes too quickly. For me that’s a necessity; not a luxury.
Good charting is a skill that can be learned, but when the basic ethical principles involved are not adhered to it can actually do patients more harmed than good. As they say “The pen is mightier than the sword” and that is so true!
Charting on a patient carries power, but with that comes responsibility to carry out this activity with grace and selflessness, never forgetting that you are commenting on aspects of that person’s life and this very act can influence how the patient is treated by others who read it. One must resist the urge to “think out loud” in a patient’s medical record where such conjecture might not be in the patient’s best interest and thus hinder their care.
Doctors, if you are using a patient’s medical record to further your personal agenda or hypothesis in conflict with the patient (or with another doctor indirectly) you are not benefitting your patient, so please stop it.
The medical record is not your personal journal, it is not the place to grandstand, to take shots at the patient, to show your ego, nor is it the place to take out your frustrations from home.
Given the fact that you assume the patient will not likely read what you’ve written it might be tempting to fill the chart with your own bullish rehetoric, but this says more about you than it does about the patient and therefore it does not belong there.
When I worked officially as a patient advocate under the federal Protection and Advocacy system devised in 1986 by legislation enacted by Congress I attended extensive training sessions on various aspects of the job and I learned alot about what a proper chart is supposed to look like.
We used to have an independent contractor evaluate all advocates’ charts on patients nationwide, and my charting was actually deemed the best in the country of all Protection and Advocacy systems.
There are certain principles that exemplify skillful charting on a patient.
1) Charting must be accurate and precise
2) It must be relevant
3) It must be written to benefit the patient
Accuracy and Precision
This is pretty self-explanatory but there is often confusion as to how to interpret what is “accurate” and what is “precise.”
Let me start by saying that you are only resonsible for charting what you know to be a fact. This does not mean that what you don’t know is not a fact; one to be disputed in the chart. For example; upon receiving my doctors’ notes last week, I discovered that my pulmonologist had written some things attempting to question my diagnosis of Sarcoidosis. Why he would do this when Emory has already confirmed the diagnosis seems suspect in and of itself and smacks of personal agenda.
My diagnosis was obtained by objective tests 13 years ago.
I had a Gallium scan and other test results such as labs which showed idiosycratic markers for the disease. That is a fact.
There is no disputing that, yet the doctor did. It is true that a follow-up gallium scan this year indicated it was probably not actively in flair now, but that does not invalidate the diagnosis itself. It only means it’s not in flair at this point in time and indicates that my current symptoms are coming from something else. It has not magically disappeared as it’s a chronic and incurable disease. It’s possible that this pulmonologist may be using outdated understanding of the disease (long ago it was believed to spontaneously “go away”), but this has been disproven with the advent of more understanding of the physiological workings of the disease.
Sarcoidisis was once thought only to be a lung disease (hence why it’s often treated by Pulmonologists), but now it is known to be a multi-system disease that can and does affect every part of the human body. It was once thought to be only characteristed by non-caseating granulomas, but has since been shown to be much more complex than that and its inflammation manifests in many more ways than once believed.
It is now undrstood by the top experts in the field to be associated and most likely caused by intracellular pathogens. It is not merely an autoimmune response after an offending pathogen has been cleared from the body, but instead the resulting inflammation is a response of the body detecting a pathogen it just can’t locate and effectively kill.
My Pulmonologist, Dr. H perpetuated further inaccuracies when he charted that my Dysautonomia was “self-diagnosed” and and in his insistance on continuing this assertion in the medical record pretty much accused me of lying given the fact that I’ve told him that this came from a doctor who treated me with IV Saline at Piedmont hospital; not from me.
It is a fact that I knew nothing about Saline as a treatment modality for Dysautonomia before the doctor ar Piedmont did a blinded experiment (unknown to me at the time) by putting me on Saline infusion, then taking me off for 24 hours or so to see what happened symptom-wise.
The doctor who tried this did not explain any of this until after he trialed this method on me. This prevents any bias I could have had and thus rules out placebo effect. The fact that I responded positively when treatment was given and negatively when it was withdrawn indicates that reduced blood volume is a factor in my Dysautonomia.
Dr. H glossed over this in his charting, disregarding what I’d told him. He made no attempt and showed no interest in verifying what I had told him, merely assuming it wasn’t true. Why? The answer to that lies in an area of his mind only Dr. H can answer, but one thing is clear; that the subtext in his charting conveys that he does not believe me.
How does this serve the patient? Answer: it doesn’t. It only serves to undermine the patient. He went on to state in the record that I was “suspicious” and “defensive at having my opinion challenged.” Hmmm. Sounds like projection.
During our last appointment he got very huffy and puffy that I wouldn’t just accept as fact his theory that my problem was psychiatric in nature and wanted to end the appointment because I wasn’t buying it. He said ” Do you really think Neurlogy is helping you?” Then was very offended when I told him I wanted to give Dr. V a chance, and his statement was “OK, I’ll take a back seat to Neurology” as he rolled his eyes and heaved a huge sigh with matching dramatic shoulders shrugged up, then down.
His charting reflects that he was agreeing to that course of action, yet he contradicts that with a lengthy monologue which tries a bit too hard to invalidate my seeking expert assessment out of state (which Neurology supports my obtaining).
He says that going for these assessments is “premature” yet he suggests I go to a psychiatrist” (which should be the last resort after everything else is ruled out, and it hasn’t been). There are alot more tests that have not yet been performed before throwing me in that dustbin. For all his talk about lack of “proof” and “evidence” he has not one shred of proof that this condition is in any way psychological. Besides, psychiatrists are generally in the business of prescribing medication (indicating a physiological cause for which medication is assumed to have a beneficial effect on a patient).
So which is it, Dr. H? Let’s stick to the facts.Let’s be accurate and precise rather than subjective and vague.
1) I have dysregulated blood pressure,
2) chronic constipation,
3) near syncopal episodes,
4) Muscle weakness and spasticity, and severe fatigue
5) Etreme thirst and need ice water by the bed at all times
6) GI upset; nausea, lower GI spasticity, inability to eat solid food for weeks at a time
7) I’ve been hospitalized and treated for such problems, and said treatment improved the symptoms without my knowledge of Dysautonomia at the time (I did not read up on it until after it worked).
8) Dysregulated sleep/wake cycle (evidenced by 3 sleep studies that he ordered and interpreted)
9) I have Central Apnea and Biot’s Respiration; both indicative of a “central process”. Patients don’t develop these for no reason. Idiopathic does not equal psychological or psychiatric. It just means the cause has not been found yet and it requires further investigation.
All the wild speculation about my condition possibly being in my head is a distraction from the task at hand and has derailed any unbiased investigation. Dr. H went way off-course with only the lack of an explanation for all my symptoms as his reasoning for wanting to send me to a psychiatrist. I don’t see how this is at all relevant, and seeing as he figured I wouldn’t see what he’d written, the intent could only be as a coded alert to other doctors who might be looking at my records to view me as less than credible. None of my sleep problems were addressed in that last appointment with him although I’d told him that the sleep attacks had returned. He was only interested in invalidating me along with all my symptoms and even my established diagnoses, as though in one fell swoop he’d completely come to revile my very core essence and viewed me as suddenly unworthy of even the most basic dignity afforded to patients because they are human beings who deserve compassion and empathy.
It was this “othering” that is unmistakably present in the room, that visceral feeling that makes the hair on the back of your neck stand up when you encounter it.
Written To Benefit The Patient
Charting on a patient must be written with the intent to do something useful for the patient.
What do you intend to accomplish?
What is your game plan?
How are you going to go about helping the patient?
These interventions should be developed in partnership with the patient, as the patient is the one who must be happy or at least content with their healthcare outcome since the patient is the one who must live inside their own body.
You, the doctor can go home and forget about the patients’ pain, fatigue, GI symptoms, movement symptoms, syncope, or other medical problems. The patient, however does not have that luxury.
Dr. H. stated in my record that he was going to go along with Neurology, but Neurology (Dr. V. to be specific) had changed course and was now on my side and no longer doubting that I have Dysautonomia. Dr. V had a very succinct plan which partnered with me to obtain the full assessment for my Dysautonomia, laid out in bullet points.
She did put the Aspergers assessment on my chart as a goal (which although I asked her at the time to keep this off the record she did not), but be that as it may, this was neuropsych; not psych as Dr. H was so blithely wanting to push.
Did he read her notes? I wonder. Perhaps he assumed that she would go in the direction he was heading and when she didn’t he lashed out using his charting as a weapon to defend his wounded ego.
Since I believe they can edit records later I have no way of knowing when Dr. H entered the voluminous material pushing the psych agenda. It may have been soon after I left his office or it may have been later once he’d seen that Dr. V. was not thinking that my problem was in my head.
Dr. V. commented on June 3rd at my last appointment that she had noticed my blood pressure had been running low. Although she did not know the underlying cause of the Dysautonomia she did not dispute it in any way, and was welcoming my going to these consults out of town, admitting that Emory does not have the facilities nor expertise to do full autonomic testing here.
Unlike Dr. H., her notes this time were constructive, laying out a plan that I was in agreement with, a list of numbered goals, (and sticking to the overall goal which was to find the underlying cause of my Dysautonomia and ultimately treating it). That is more like it.
To this day I believe that Dr. V. in her heart is sorry for how she misjudged me on our first meeting and truly wanted to make up for the scathing rush-to-judgement that is forever branded on my medical record.
I don’t know why she did not edit it when she returned from maternity leave, but maybe the reason was to show that sometimes doctors can be wrong and that they can also admit that they were wrong and can change later. It takes a bigger man or woman to admit when you made a bad judgment call and correct it than to stick to your story even once you realize your first impression was incorrect.
It did hurt to know that what she’d written the first time was the straw that broke the camel’s back and resulted in both my GP and Pulmonologist’s diverging from me and the impetus for the dissolution of those doctor/patient relationships, but she is not solely responsible. They have a part in it too, and it’s disturbing that either of them would so quickly dash my credibility on the rocks because of some other doctor’s opinion who had just met me. Those two had known me as a credible person; one for about 1 year, and the other for 13 years.
They should have known not to be swayed from my side based on some opinion espoused by a doctor that had no chance to know me as they had and had only a limited snapshot of the circumstances under which I came to the clinic.
In the final analysis Emory’s Administration didn’t allow things to work themselves out and to set the record straight once more data could be obtained. They were too invested in making sure it never would be worked out, too invested in keeping the record toxic and defamatory so that I could not obtain care in or out of Emory.
In their fervor to interfere between doctor and patient we may never know if all this might have ultimately been put in the past and whether the relationships that still existed would have become stronger once more facts were elicidated upon further testing.
Perhaps this could have been a model, a learning experience for other doctors to see how things can evolve over time and how things can be put back together after such a fire-storm of controversy sets the record on fire.
Maybe behind the scenes Administration thought such a mess had been made by their various employees that it was irreparable, but the most unfortunate thing of all was that by the time they started blocking people from working with me things had died down considerably, those who had openly turned against me were gone, and when Dr. V. returned it looked as though things might have a happy ending afterall.
Just as my care made a constructive turn, I encountered a brick wall; the corporation added insult to injury, swooped in, and never allowed the answers to play out.
Instead of becoming a teachable moment for other physicians watching it this case became a prime example of how not to do conflict resolution when you discover that agents of your company have engaged in unethical charting on a patient.
Aspergers and other forms of Autism were once thought to disappear once a child reached adulthood, but now experts are discovering that’s not so. Many people reaching the age of majority who were diagnosed as children who may have had services while growing up and an increasing number of undiagnosed Autistics have now “aged out” of the social service system and find themselves at a loss as to how to fully function in society.
While Autism exists on a spectrum with each individual presenting differently in both strengths and defecits, there are certain traits that people with this condition generally have in common;
* Difficulty in reading social cues from others in their environment.
* Difficulty in communicating their thoughts, feelings, and intentions to others in a form others can understand.
* Trouble in processing and making sense of the world around them.
* To some degree feeling uncomfortable making eye contact.
* May have sensory issues, and some don’t like being touched, certain tastes, textures, sounds, and/or smells.
* Literal thinking and impairment in one’s ability to decipher sarcasm, lying, disingenuousness, deception, trickery, two-faced behavior, and in some instances out-and-out meanness.
* Tend to take people at face value.
* A strong moral sense of honesty, right and wrong, and justice.
* May come across as odd or accentric.
* May have trouble regulating emotions (either appears emotionless as in showing lack of affect in voice or facial expression, and/or the opposite may present itself in that the person may get very upset at times).
* May have inflexibility in changing one’s routine.
*May have very specific and sometimes narrow interests that are focused on very intently, and difficulty “switching gears” to transition from doing those activities to doing other activities.
* May speak long-windedly and circuitously especially about those topics that interest him/her, often unaware of when others lose interest.
* Difficulty conceptualizing opinions widely divergent from their own (once believed to be a lack of empathy, but now recognized as difficulty with a particular type of abstract thinking).
*Repetitive behaviors; known as “stimming”(some of which have the function of self-soothing).
*Co-morbid conditions can include ADD/ADHD, Anxiety and/or Depression (usually situational), sometimes Obsessive-Compulsive Disorder, and more recently a variety of medical conditions are recognized as being associated with Autism such as GI conditions, Dysautonomia, allergies, Multiple Chemical Sensitivity, Mast Cell Activation Disorder, Ehler’s Danlos Syndrome, and other Autoimmune Diseases.
*Often these individuals are vulnerable to bullying by not-so-nice people who pick up on the fact that something is different about them and take advantage of their “blind spots.” This does not only happen to children in school settings, but can happen to adults also in the workplace, the community at large, and even in healthcare settings.
There are a growing number of cases documented of abuse and/or neglect in ERs and in other hospital settings. Staff often lack the training and patience necessary to accommodate such populations and therefore handle the situation very badly.
(Note that these symptoms in people with Autism often become worse when they are hungry, thirsty, or have medical issues that are not addressed in a timely manner. This is why it is especially important to pay attention to these clues and take them seriously. They are not a sign of mental illness nor of the individulal just being “difficult” nor are they a defect of character, but indicate that something is legitimately wrong that needs addressed ASAP).
It was once believed by experts that boys were affected at a 4:1 ratio to girls, though some believe the ratio is actually 16:1, more recent data suggests that the accurate statistic is likely 2:1 (male to female) or may be even more evenly matched between the genders.
Dr. Judith Gould of the Lorna Wing Center and Center for Social and Communication Disorders believes that current statistics about the prevalence of girls with Aspergers are under-representative citing a 2.5:1 ratio.
Tania Marshall did her docturate in Asperger’s in females, has published a number of books on the subject, and is currently practicing in this sub-specialty. She has found that it’s quite common for girls to fly under the radar until at least secondary school when communication and interaction among girls becomes more emotionally-based and a social hierarchy begins to develop. Females are better at concealing it and emulating those behaviors that are socially acceptable (referred to as masking).
For those adult women on the spectrum who are now in their 40s and 50s virtually no diagnosis of girls existed in the 1960s and 1970s when females of this age were children, so many women are just now obtaining official diagnosis and having to make up for a lifetime of struggle, misunderstanding, and riducule from those who mistake their condition for something else.
Back in those days nobody believed that girls could have Autism, so other euphemisms were used in lieu of official diagnosis when they were taken to neurologists and/or neuropsych tested. (I have miraculously managed to keep a report I had when I was tested at age 5).
This is in effect what happened to me. Neurologists have been telling me for years between the lines with statements such as “Your brain is wired differently” and “Your brain’s not hooked up quite right” and when I asked what I could do about it they were at a complete loss as to what to tell me.
In those days there really were no effective interventions or coping mechanisms. With all the stigma attatched and ignorant people out there confusing Autism with mental retardation, I really didn’t want to “go there” having been given the message that this was a family secret that shouldn’t be explored any further and was better left alone. I pushed it to the back of my mind telling myself it must not be true because all the media images of Autistic people were of children wildly out of control and non-verbal 24/7, 365 days of the year. That was not what I was like, but I had some of those problems at one time or another under certain circumstances and alot of the other quirks I had and still have I didn’t know were actually indicative of it.
When things went South at school due to my inability to focus my parents just switched me to a different school to avoid the inevitable questions that would ensue.
Throughout my educational years I was luckier than most in that I didn’t run into much bullying except for at a new private school in 5th and 6th grade in which the girls were especially snooty.
Then in high school I just tried to remain as invisible as I could and other than appearing a bit shy, nerdy, and separate, nobody really suspected nor bothered me.
I really thought this was something I would take to my grave as I figured things couldn’t get any worse with my just going on with my life and I was used to coping the best I could. It worked fairly well for awhile and I managed to “pass” except for a period mostly in my late teens and 20s when it was mistaken for other problems for which neither therapy nor medication did much good.
Been there, done that, so thanks but no thanks in case anybody’s thinking of suggesting that, LOL. Good old Dr. H. was and he couldn’t have been more off-target. I received some highly disorganized medical records in the mail at the end of last week which included doctor’s notes.
He and Dr. V’s Nurse Practitioner both floored me with their outlandish interpretation of what was going on with me medically; cynical verbiage that I won’t even dignify here because it is so judgmental and unkind that it’s unbefitting anyone who calls themselves a”medical professional.”
Dr. V’s first entry was pretty bad too, but she seemed as best as I can tell to reverse her opinion once more data became available about my Dysautonomia and I had a chance to disclose to her about the AS. (She did officially diagnose my Dysautonomia after our last visit on June 3rd, by the way, so that’s progress).
I’m pretty sure she’d just automatically gone into the first visit with a bias from what The Dark Man had charted. Even though she’d changed her mind later, it really scares me how easily influenced these doctors are to think the worst of a patient.
It appears that Dr. T steered clear of the pile-on and kept her notes constructive; good woman! ♥
These other people were in actuality seeing symptoms of my Aspergers and charting tidbits about my little quirks here and there and interpreting and/or knowingly misconstruing those traits as something almost willful on my part, poking and prodding at it as one would bat at a pinata!
Now I know why they were treating me like some sort of criminal or dangerous individual to be feared and loathed.
Such is prejudice in its ugliest of forms. And now it all makes sense why the spin they put on it is so ego-dystonic to me, because not only were they proposing something I don’t have in me, but it’s the very antithesis of who I am.
It is they who are dishonest and have duped me into believing they were actually trying to help me, smiling and pretending to like me and creating this ruse of positive relationship that I was unable to see through because of my Aspergers!
I find myself now unable to trust another doctor and I don’t know if I will ever be able to, at least not for a long time, because how can I trust when people are being genuine when they can so easily lie to me with a straight face? How can I know that they won’t write these terrible things again that are so untrue and unfair about me?
When I became really ill with the most recent illnesses, the protracted suffering and stress due to the institutional bullying, slow-down, and stoppage of care that I was subjected to over the past year (especially the past 7 months) caused my AS to become much more obvious.
I am now at a stage in which I don’t think I can put the Genie back in the bottle. Now there is one more problem that I need to do something about and find services for soon. Try finding services for a 55 year old adult woman in Georgia on Medicare. It’s not easy, and in fact nearly impossible.
Because of what’s happened at Emory it is no longer stable and manageable and I’m pretty sure this destabilization is permanent. People have no idea what I’m dealing with at home.
Now that I’ve decided to come out publicly I am trying to embrace it as best I can and use the positive aspects of it with which to cope. Although I didn’t want to open up this can of worms initially I am trying now to make lemonade from these lemons and educate the public so that this won’t happen to others who have to go to the doctor for some medical problem and risk falling victim to such atrocity. Maybe others can learn from my process and together we can make the world a safer place.
In 2013 A UK study published in the medical journal “Brain” began uncovering the differences between males and females who have Autism, not only in how they present symptom-wise, but in terms of brain structure.
The Cambridge research published in this esteemed neurological journal used MRI (Magnetic Resonance Imaging) to compare males with and without Autism, and females with and without Autism.
What they discovered is that overall, males had greater tissue volume, but that females’ brains with Autism more closely approximated the male brain than did Neurotypical females (those without Autism).
However, males with and without Autism did not show structural differences from one another.
A growing number of experts feel that testing remains behind the times, having been devised to detect Autism in males and that this may account for the under-diagnosis of females on the spectrum.
Many females present with symptoms often mistaken for mental health conditions such as eating disorders, drug abuse, etc…
Women with this brain orientation come from all walks of life. Some are unemployed,
some are professionals,
some are single,
and others are married and/or with children.
They come with all different combinations of skills and challenges. Some look obvious and others, you’d never know unless they told you.
Despite the fact that adult services remain hard to access, there is hope in that more research is being done with adults, and more is being learned about how to cope with it in addition to a growing advocacy movement by and for people with Autism. I will leave you with this beautiful music video by a fellow Aspie woman. Her voice is absolutely lovely. Please share and raise her up.
Nothing about this diagnostic process has gone smoothly, but transportation was the one thing I thought was wrapped up. I’d called Southeastrans (Medicaid’s transportation broker for this area) a month ago to find out what the process was and was told that they’d schedule these out-of-town trips just the same way as they did the in town trips; that I just needed to call their main scheduling number and they’d set it up.
Meanwhile I set about requesting all the necessary medical records (two discs for each of the two doctors).
The sleep study tapes were elusive and I found out that Radiology nor Medical records has those accessible; that they were handled by another records department connected with Sleep Medicine. After about a full 2 days I finally got routed to the right department, but initially only the latest sleep study (July 2015) was showing up in the computer database. I had 3 sleep studies in all (each of which yield important data that any top level specialist will be able to see the significance of in the diagnosis of multi-system disease). Researchers who are up on the latest medical knowledge understand that sleep studies are often the first sign of such disease processes and they give important markers that may not be fully detectible via other tests for years. Finally after much searching around somebody suddenly located the other 2 tapes and I was told they were being copied onto dics as we spoke.
I suddenly found that people who answered the phone in the various departments and call centers were greeting me in an uncharacteristically friendly and helpful way, asking if I were “having a good day”, some almost as if they knew who I was, and this time when I called to schedule my follow-up appointment with Dr. V. the appointment went through! Suddenly people were actually returning my calls again and they were not proxys but those whom I had asked to call me back!
It remains to be seen whether or not everything is unblocked now since they received my cease and desist letter. I hope it is and that I will have no further blocks on my scheduling from here on out. I have since received no explanation via Patient Relations nor from Administration directly as to whom initiated the block and the circumstances under which their Chief Medical Officer was called in.
Good old Dr. H. the pulmonologist may have helped me much more than he knows. Even if he (the subjective human) has or had doubts in the short-term about my underlying condition(s), his objective data reveals important tuths that can’t be denied. Within these studies could lie the key to my underlying condition(s) and when viewed by the right specialists who understand patterns and correlations it could be my salvation, and will very likely get my treatment back on track.
Maybe in time he will come to understand that his hunch about a central process in the Pons and/or Medula was correct all along. (Afterall, that was one theory as to why I had the slowness of muscle transmission in my left leg EMG results). Not that anyone would want something to be wrong there, but sometimes a doctor’s admitting he was wrong in his doubts of his first instinct and the patient’s instinct is the best thing for the patient and for the doctor/patient relationship. If the underlying condition(s) can be identified, caught early enough, and treated with the best science has to offer, maybe all’s well that ends well, and all of us can go home satisfied.
I have always and will always maintain that my team of doctors need to keep their eye on the ball and avoid becoming waylayed and distracted by other agendas. The doctor/patient relationship is paramount, and anything that stands in the way of it must be removed. Such distractions are exactly that; distractions, and must be put aside if one is to serve the best interest of the patient. This is an ethical and moral imperative above all else.
There is enough evidence now that something serious is going on in my body, and so I hope from here on out my doctors can dispense with any questions they may have had in their own minds as to that reality, so that we can put our collective effort into finding out what that is.
Well, back to the transportation issue which pulls all this together; I called Southeastrans last week to set up the trips to these two out-of-state specialists and suddenly got the response from the scheduler “We don’t do that.” The scheduler got her supervisor on the phone and she told me that even my Florida trip was too far for Southeastrans to travel; that their broker system only takes people within a 50 mile radius. She did not know of anything else. My heart sank. Knowing that this is a major consideration and that I cannot afford to cover transportation out of pocket with my tiny Disability check amount, I persisted, asking what the process is to get it authorized, as I knew I’d heard from other patients that they were covered for longer-distance trips, especially when their home state did not have the proper testing facilities and specialists and were at an impasse. Surely they couldn’t just leave indigent patients up a creek without a paddle.
The hotel in Cleveland Ohio has been booked, appointments have been made, and records have been ordered on disc, along with many hours of logistical telephone calls, blood, sweat and tears on my part. I have done the majority of the work myself to facilitate these independent evaluations and I was going to be damned if a technicality so idiotic would stand in the way now. I called the Medicaid Commissioner’s office whose aid then put me in touch with another department and there I spoke with a man and a woman who basically told me it was not going to be a problem; that all I had to do was have my doctor fill out a form with a foundation affilliated with Medicaid that would cover airfaire, lodging, and food for my trips, but advised that my doctor start the process right away since time is running short.
I’m supposed to be boarding a plane bound for Cleveland, Ohio on July 6th, come home Monday afternoon the 11th, and then head out to Gainesville, Florida early the morning of July 13th to arrive there at 9:30 AM for a full day of testing. It required my scheduling the Cleveland Clinic appointment 3 months in advance, and the one in Ganesville, FL, 6 months in advance. All their other doctors were booked a full year in advance, so I was lucky to get an opening in 6 months as it is!
I couldn’t imagine there would be any problem in having Dr. V. fill out the certification form so that this non-profit organization could ensure these evaluations came to pass, but I was wrong in that assumption.
My detailed message containing the process, foundation’s phone number, and my necessary information sat on the Patient Portal for about 2 days un-forwarded (Dr. V. was unaware of its contents since somebody else needed to forward it to her first). As soon as I realized the doctor had not received it herself I called by phone and was told by a representative in “Brain Health” that she would then mark my message “high priority”.
Soon afterwards I received a reply with a nurse’s name on it as though she were forwarding a message from the doctor asking me to ask my new GP to fill out the form instead (the new GP who does not work for Emory). I could not believe this! There is no time to waste, and besides, why would Dr. V. not fill out the form when she herself wanted me to have these consults? It didn’t make sense. This is one delay that could throw a monkey wrench into the whole thing, and I don’t know how long it takes to process once the doctor does fill it out and submit it through the proper channels. My first date of travel is about a week and a half away (not counting weekends), and nothing is nailed down yet! I wrote back saying I would ask the new Primary Care doctor (Dr. P), but that if she says no and feels it’s the job of my neurologist to do since these are neurological consults, then I will still need Dr. V. to do it. I impressed upon her that time is ticking away and I can’t afford for anything to go wrong. I have not put in all this work and effort just to lose this opportunity.
With no local autonomic clinic close by, and my abnormal movements being not your average garden variety movement disorder, these doctors (if they care about me) should move heaven and earth to see that I make it to both appointments and do everything they can on their end to make it happen. It’s just the right thing to do.
After I got off the Patient Portal I immediately wrote a letter to my new PCP with the same request I’d sent Dr. V and faxed it to her. I have since found another fax number on some other paperwork from her office and am faxing it to that number as well (to make absolutely sure she receives it).
I hope to God that when I follow up on Monday that I’m told it’s been done and being processed by the foundation that issues the funds and makes the arrangements and that all this will be in time for it to go off without a hitch! It has to! I don’t think I can wait another 3,6, or 12 months to reschedule and arrange this over again.
Last week some nice person in one of my chronic illness groups sent me the link to another woman (this one in Colorado who had received a letter very similar to the one I received from the Chief Medical Officer. This patient is a civil rights attorney.
It seems as though these big healthcare corporations are devising boilerplate FU letters to send patients when they’ve messed up and mismanaged somebody’s care and want to shift responsibility. Such letters are very unwise. The thing is, they will not hold up under federal non-discrimination laws and patients will prevail. Any legal department will clearly see that and advise the corporation to retract such actions.
It’s always a wiser tactic to do the right thing when you realized you’ve F’ed up a patient’s care and do something to correct it and satisfy them from that point forward than to follow one bad decision with another, follow one lie with a bigger lie. In the end no amount of money or image is worth covering up wrongdoing and throwing the patient under the bus. This is the care of human lives we’re dealing with here, not inanimate objects. Earn that image and you’ll have no problems.
There really is something to be said for going that extra mile for the patient rather than doing the least you can do or standing in their way. In healthcare even more than other businesses, true customer satisfaction is very important.
I sincerely hope that Dr. V. will come through when all is said and done and that she will have safe passage to help me maximally, unfettered by competing interests and unbeholden to her employer. As I said earlier; the doctor/patient relationship is paramount. I want to trust that in the end she will put my best interest first no matter what comes. I cannot be let down by one more neurologist.
It seems my case has been made into a political football, and the Dysautonomia, a hot potato. Although I do think some headway has been made it is far from over and there are still some elements that wish me harm who are trying as hard to have things not work out as I am trying to make things work out.
I don’t think my GP is going to treat me no matter how many diagnoses I get. Once I meet that bar I can pretty much bet he will produce another one. If obtaining a diagnosis were his intent then I truly believe he’d have been actively facilitating these independent evaluations.
Earlier today the woman answering the main switchboard informed me that my pulmonologist and GP were talking. I don’t know if it’s possible for my pulmonologist to talk sense into him and since by the end of business I’d heard no new news I had to conclude that any attempts must have fallen on deaf ears.
There is something going on that I’m not privy to, and probably neither is my pulmonologist; probably something of a systems nature and maybe Dr. B’s also burned out or has some personal problem he’s not willing to admit. None of this adds up. He himself has enough proof to diagnose me with the Dysautonomia 10 fold. They can sort out whether it’s Primary or Secondary later.
I can tell you that there are some political things going on behind the scenes that I’m becoming aware of now. I was informed today by the “patient advocate” who deals with main campus ER (and I use that “advocate” word loosely) that “nobody will call you back.”
She is making rude harassing and unsolicited calls to my house now to try and intimidate me because she knows she’s handled things very unethically and people are now aware of it. I don’t respond to threats and intimidation no matter how ill I get and this corruption will be rooted out. T. J. is no patient advocate. She is a wolf in sheep’s clothing. She’s most likely logging into the messages that come in and reading and violating patient confidentiality.
I’ve already caught the Head of ED doing exactly that. He’d admitted it in a letter he’d sent me in which he tried twisting around something I’d said in confidence to my GP on the Patient Portal. Since he did not treat me that is by Emory’s own regulations a violation of privacy!
There are some people at Emory who are not connected with T.J’s office that have not called me back today either, people who ordinarily would, so I wonder whether that has any connection to her. She implied in what she said to me by phone that she was messing around trying to block things she has no business blocking. Emory does not need to employ people like that.
I finally received the certified letter from Emory Medical Records. They have officially refused to even amend the ER record and are claiming it’s “correct and complete”. With a position like that these people are really throwing the dice that I’ll roll over! They clearly don’t know me. I’ll die before I ever let myself be defamed in such a malicious way. If they think this will run me out of town they have another thing coming. This is where I live and I’m going no damnwhere!
A woman fighting for her life is nothing to mess with. I have my warpaint on and I am ready for them! Clearly I have threatened to unearth something much bigger than my individual incident. Although I am not entirely sure what that is, I suspect the hospital may be hiding some malfeasance involving care rationing of low income patients. This is discrimination! Emory is a high volume hospital with a mix of patients from one end of the spectrum to the other. The only exception to this is that they don’t take totally uninsured patients and don’t write off charges.
As a high volume hospital they would have a vested interest in limiting time and resources given to low income patients while concentrating more time and resources on higher-income, better insured patients. They are not ethically supposed to do this, but it often happens in such health systems. People just don’t openly admit to it. If they receive Federal funding they can lose it if found to be discriminating based on income, disability, or any other minority status.
That could account for why when my disease accelerated my care did not also accelerate. One would think that care would be expedited to match need, but in an instance where there is care rationing it actually is just the opposite. That would also explain why my GP and several other doctors waited until I totally crashed in November and I had to make the decision to go to the ER. That way they incurred no costs and instead Piedmont admitted me (saving Emory even more money). Then 4 days after I was discharged from Piedmont too early I ended up at Emory’s ER and they found every possible way to cut costs on me.
* They put in an IV but didn’t use it for fluids even though it was indicated.
* They ordered but never offered nor gave me Maalox and Ibuprofen
* They ordered and offered only Valium (2 in a 9 hour period to be exact and I only accepted the first).
* They saved money for the hospital by not feeding me for 9 hours and only issuing 1 meal at the very end.
* Nursing care was minimal so they spent almost no time/money on that. I was mostly left unattended.
* They didn’t officially admit me other than moving me to their bridge unit for about an hour and I was discharged without an overnight stay.
* They had the ER doctors and the resident do a neuro exam on me (3 to be exact) which they figured they could bill for and gain a higher reimbursement rate because the skill level was higher than nursing. They had better not, but in case they do, Medicare might think something looks funny that 2 doctors felt the need to test my reflexes one right after the other (except that Macdonald came in to do it later). Overkill nonetheless!
Then after all that the 4 of them (Hudak included) couldn’t manage to put their microcephalic heads together and come up with a real diagnosis!
Yup! Sure looks like care rationing to me! You can bet that ER will get no more business from me no matter how sick I become! The other day when I almost fainted twice I could have gone 2 blocks down the street but refused! That’s how much I can’t stand that place.
I’m already working on a letter to Secretary of Health and Human Services Silvia Burwell to appeal Emory’s Dept. of Medical Records’ refusal even to amend my records from that awful ER experience and I will be asking for a full-scale investigation not only of the mishandling of my case but systemically. Some staff have shared with me that the ER has alot of complaints. While I’m at it I can have her check and see how many of T. J’s complaints are ruled “unfounded”, and how often records are not amended as requested. I’m sure that will be quite illuminating.
Tuesday I have an appointment with the Nurse Practitioner at General Neurology to go over various scans and come up with a “plan”. With all the internal politics going around this place I really feel uneasy about meeting total strangers at Emory and discussing my case. Piedmont was supposed to be FedExing a disc to them so that doctors there can read the films themselves but I was not able to reach a live person there in Piedmont Radiology. Nobody at Emory General Neurology got back to me today to confirm the shipment on their end as promised yesterday. Dirty tricks? One has to wonder.
I think it’s time to order some more CBD chocolate covered Pistachios and maybe other edibles, as it could be a while before I see treatment from a doctor. I didn’t order enough really for 2 weeks the first time around as I found I needed about a quarter of a pack per day to feel improvement in my pain (probably about 125-150 Mgs/day). Nonetheless when I did reach a high enough dosage I got some relief. Maybe also the sweetness will get rid of this terrible taste of salt in my mouth that is now present nearly constantly.
I sit here trying my best to brush out the mats from my hair that have been developing because I have to sleep more than I used to and the fatigue and muscle pain some days are just too much to brush it. Such is life for those with chronic disease and no caregiver at home to help with these types of things.
I get through each day on a wing and a prayer, hoping every day that something positive I’m working towards will come to fruition. If I could write all my own orders and prescriptions I would, as it seems now that getting everything I need depends on some MD’s name on some form or another and my doctor has decided somewhere along the way to become one more obstruction along this already bumpy road I’m traveling on. He finally wrote me back on the patient portal today to say that he couldn’t go along with the continuous saline infusion, and that he’d done all he could with home healthcare.
I can barely bathe myself although the shower bench helps somewhat. I still can’t reach everything on my body, and that’s not me, and its not laziness either. I’m very meticulous about getting clean and I don’t like it being half-assed and I like to shower everyday, but without help I simply don’t have the stamina, and because of my stiffness I find it hard (and on some days impossible) to reach my toes to wash them. I can’t reach my back even with the long handled sponge thing I got through a local non-profit organization because my arms just won’t bend in the right ways to reach where I need to reach.
Daria, the Care Coordinator told me last week on the phone that they would be glad to pick up my case again and are just waiting for my doctor to write the order and submit a plan, so the obstruction isn’t coming from them, nor from my insurance. It’s coming from my GP. Why does it not bother him that I am home alone without proper help so that I can do the activities of daily living? After 12 years you’d think he’d care that I’m here struggling and using up precious energy reserves I don’t have just to do the simplest things.
Nothing has really improved in my functionality, so why is that call to discontinue services? If anything it calls for increased services, as this disease isn’t going away in 6-8 weeks. I don’t want to deal with it either but I don’t have that luxury of just ignoring the whole thing. I still cannot do my own grocery shopping and the guy who was helping with that is getting more and more lax, getting 1 item when I ask for 3 of something, 2% milk when I asked for whole milk, fully cooked low-sodium bacon when I asked for the applewood smoked bacon that he got the last time, and running out of things and being SOL because I don’t have things needed to complete a recipe.
I find myself time and time again having to prostrate myself just to have the basic necessities and get through life. I have no family to speak of to take care of these duties, and in order for the social worker with the home health agency to help me apply for longer-term help my doctor needs to get me recertified with them. I really need a personal assistant and in order to get the Independent Care Waiver through Medicaid so I can get one he needs to send his doctor’s notes to Shepherd Spinal Center so I can get the pressure mapping evaluation for a wheelchair that will support my whole body properly. The paperwork for the Independent Care waiver asks for the wheelchair specs (in addition to other help I need) and it has to be specific, but Shepherd can’t schedule me until he sends the doctor’s notes.
In addition, the Modified Barium Swallow Test he ordered in December must be updated because the December prescription is too old. I have asked several times yet he has not done that. I told him that it’s becoming too much to have to give these constant reminders and that I need him to take some initiative and go to bat for me as my GP.
What the hell have I done to deserve this? I’m trying not to have any more medical neglect and make things come out better for the second half of my life but nothing I say seems to make a difference. No amount of self-advocacy does any good anymore. It’s bad enough not to have any control over the physical processes in my body, but then to have no control over everything else is just too demeaning for words.
It seems that these doctors see me as a non-entity and my voice is of no consequence in anything that happens in my care. They just do whatever the hell they want whether I like it or not and I’m not supposed to have any say in the matter. Well, fuck that shit! I’m a grown-ass woman and it’s my decision what is done with my body and not! They are only consultants (I like that term better than doctor and I think Australia and the UK has that about right). Who died and made them king!??? These doctors are supposed to be working for me, not the other way around. I’m getting really fed up!
I asked my GP what exactly happened that one minute he was ready to treat my Dysautonomia with the continuous Saline infusion and now he’s not and I asked if anyone at Emory had scared him out of it and if so I wanted to know whom.
If I find out Dr. M. and/or his buddies have anything to do with this I will be a ball of fire and will not rest until justice is done. I don’t need this right now as I’m trying to get to the bottom of my underlying condition and get help for it.
Just like I said to Dr. H., if a patient is suffering then treat it! It’s as simple as that. There is no excuse to sit there and allow someone to suffer when there is something that can be done to alleviate it and it’s relatively safe.
I found that this mode of treatment works for me so I should have access to it if that’s what I choose. I’m well aware that it won’t cure it, but if it will give me more energy, help my bowels move more regularly, improve my appetite and reduce GI problems, make me less thirsty all the time, stabilize my blood pressure, and make me feel faint less often then it’s worth it to me! He has given me not one good reason why he should not.
The port can be put in at Emory’s outpatient center, and home healthcare can do the infusions with their nurses, so frankly what’s the problem??? It’s not like I’m asking for a breast augmentation, this is something medically necessary so I can have some quality of life and it may even prevent an emergency down the road!
He has not come up with a better idea and unless and until he is willing to go out of his way to do the amount of reading and researching I do each day to help come up with something better then as far as I’m concerned he just needs to defer to me.
Besides, I always see the trajectory of things. It’s one of those special perceptual talents I have. At this rate I will probably end up back in the hospital. That is not the preferred way to do this. This method is supposed to be proactive, but left untreated, persistent dysautonomia can be dangerous and cause all sorts of complications. With the blood pressure readings they documented at Piedmont it would be medically irresponsible not to treat it at this point. Maybe in the past it wouldn’t have been as crucial, but now that we have that information from my hospitalization records (and I assume it’s been entered into the electronic records system at Emory) it is really indisputable.
If Dr. V’s hypothesis is right about this whole thing being caused by my Sarcoidosis then I will most likely be considering other treatments that are given by IV such as antibiotics or IVIG, and having that central line will take alot of the demand off my stomach and GI tract in addition to being useful for the Saline treatment. I’m taking about enough pills by mouth right now. If I need to switch from Tizanidine to Baclofen for my spasticity that is the quickest delivery method there is to have it work immediately. They can draw blood from it and do a number of things that will make life easier for me.
If it’s not my Sarcoidosis that is the underlying condition differentials could be one of several Atypical Parkinsonian Disorders such as Multiple System Atrophy (MSA) or Corticobasal Disease (CBD). It was uncanny how many of the symptoms I have that fit the description of either. It was also interesting that the neurologist who gave the lecture in the Youtube video said that they have some symptoms in common with ALS. If I have one of those then it makes perfect sense as to why one might think it was ALS initially. Apparently these other two are even less publicized so they can often go longer than ALS to be detected and diagnosed. These can cause Dystonia, Dysautonomia, and Myoclonus.
Today I was in such agony I could hardly stand being conscious. It was one of those days one would have to die to feel better (and I’m sure those of you reading who have chronic illnesses know how that is).
My face and body were hurting really badly (that same “feel the burn” feeling I had back in August along with inflammation), I had alot of nasal congestion, the roof of my mouth ached, I was nauseated and had colon spasticity. I had to take Tizanidine and my Tramadol and Ibuprofen and sleep it off before it finally let up. I also had more fasciculations in my big toe on the right foot that lasted quite awhile after my nap.
It’s Wednesday and still no call from Radiology to schedule the Gallium Scan. I called and left a message for the nurse to call me and let me know what’s going on and when I can get this done. I hope Dr. V. didn’t go on maternity leave and forget about it.
Yesterday I got stuck lying on my back and couldn’t turn myself for at least 10 minutes and nearly had another fall when I finally managed to roll my bottom half off the side of my bed. This happened alot in the Summer and Fall and I thought it had stopped but looks like it was just taking a temporary break.
I’ve also noticed my jaw dislocating, and cracking in my jaw and in my cervical spine over the past week or so. That needs to be looked into. I asked him to order an MRI of the jaw and sent him exact specs for how that order should be written to get the best view of it. We’ll see what he does with that. I also asked him to get a copy of the first imaging that was done 10-12 years ago by the oral surgeon at Emory which showed I had TMJ so that we can compare and see if there has been further degeneration.
If I take the time and energy to go in to see him and come up empty-handed I am going to be pissed! I expect these orders to be done, and I think he should also have reached out to the movement disorder specialist I’m seeing in July to help facilitate and give him some history and try to make this as easy for me as he can so that the experience will be fruitful and so I’ll be treated with respect.
If my GP conveys to the movement disorder specialist that he’s behind me 100% then it is likely that I’ll be treated well and that the specialist himself will put 100% into diagnosing and truly helping me so that I can come home and not have to continue to prove myself ad nauseum as I have had to up until now. That is probably the most tiring thing I deal with on a day-to-day basis and its high time that my condition be given the credence it deserves. I did not ask to be sick nor to be poor and I believe everyone should have access to the care they need for their conditions no matter what their station in life. It’s just a matter of dignity and humanity. At the very least these doctors should take care of these medical problems expeditiously and give me the best quality of life possible under the circumstances of what my limitations are.
Tomorrow I am seeing my liver specialist. My liver enzymes have been elevated chronically now for about 8 or 9 years. I think at this point they need to do more than monitor it. A test result doesn’t keep cropping up like that for that long for no reason. It’s there to tell us something of significance. If it’s not my Hepatitis B reactivated then they need to find out what else it is. Maybe my liver can elucidate some useful clues in solving the other stuff.
I’ve pretty much run out of patience with all the diddling around and delay tactics. I’m quite sure if I had money and top of the line insurance I’d have a diagnosis by now and would have been on treatment for years by now, and maybe I wouldn’t be near as disabled as I am currently. There’s alot of rationing the doctors never tell you goes on which determines how aggressively (or not) they treat a condition.
The poor die silently of medical neglect every day and for the most part it never makes the news. I do not want to become one of those statistics.
Friday morning filled me with a sense of foreboding. I showered, dressed, and prepared some coffee, trying my best to distract myself and do comforting things so as not to be too terrified of the early afternoon appointment with the neurologist at Emory’s General Neurology Clinic.
As much as I’d gone over it in my mind what I was going to say, and telling myself I could always say no to things I couldn’t help but shed some tears as I waited in the kitchen with my dog, Carmella for the transportation van to pick me up and deliver me to some unknown fate; good or bad, I didn’t know. Despite my best attempts to stay calm I felt like poultry aware of its impending slaughter with every passing minute.
I told myself that at least by going in there even if just to talk to her I’d be established in case I needed one of the specialty clinics later on once the independent evaluations were completed over the next few months, and maybe I wouldn’t be as frightened when the time came to see the out of town Movement Disorder specialist.
It wasn’t long before the driver was knocking on my door, a heavy-set black guy who looked to be somewhere in his 30s. I rushed out in my power wheelchair dressed in black and white long-sleeve print shirt, bright red cotton pants, and a camel brown coat which had soft faux fur on the inside. In my hurry halfway down the ramp to the driveway I realized I’d forgotten my pillow and thought “Oh damn, now my neck is going to kill me by the time this is over” as my wheelchair doesn’t have a proper headrest or any neck support, but it was too late to go back and get it. I had my usual Styrofoam cup of ice water with me and everything else I needed, so I ventured out hoping for the best.
When I reached the waiting van another guy got out and let down the left and I loaded up, then positioned my chair so that they could secure it to the fixtures in the floor. Being that I have a Hoveround, these guys never know how to attach it, so I had to show them where the hooks could be connected so that the ride would be safe. With a little tinkering they got it hooked up and the second man who was chubbier than the first sat down on a bench behind and to the right of me. Halfway down my street as we pulled away I heard loud snores coming from the man behind me. I glanced over and he had dropped his cellphone, slumped over in a half-sitting-half reclining position. I motioned to the driver who seemed unphased though slightly amused and he remarked “Oh yes, he does this all day. All day. It’s just part of the package.”
As we neared our destination the man in the seat behind me was snoring so loud I thought he might have a stroke. I mentioned to the driver that he might want to look into having a sleep study done and said that if the company provided health insurance he could have it done in this same building, that for someone to be sleeping that much on the job wasn’t normal and there had to be something medically wrong. The driver said he was glad someone else noticed and that they’d have to look into that as it would be a good investment, given that he didn’t know whether this guy would keep his job if this continued.
I entered the building, then went to the 5th floor. The waitingroom was modern with a curved wooden front desk and a young woman with black-rimmed glasses and long black hair who appeared to be Indian or Pakistani descent sat behind it on the left, and a young man sat at another computer terminal on the right. A flat screen TV was on mounted on the wall on the left side of the room. There were only a few other patients there sitting in danish-style wooden chairs that were positioned in two rectangular formations on each side with a space for people to walk through in the center.
I went over to the woman behind the reception desk and checked in, and was told that the doctor was running a little late because of a meeting but would be out shortly.
It looked like a group of about 10 men and women filed in and down the hall to the rooms to the back just as I positioned myself near a small end table. I fidgeted a little, rubbed the inside of my furry coat, then decided to get out some pieces of ice to suck on. An elderly man and his wife sat down just to the right of me, and it never fails, when I want to be discreet something like this always happens. The ice had melted slightly and stuck together so a piece I was trying to break off flew across and landed on the carpet in front of me out of reach. Thee wasn’t much room to maneuver my wheelchair and I was afraid I might run over the wife’s foot if I went to pick it up, so I wasn’t sure what exactly to do. Luckily the woman asked if she could help me and got up and deposited it in the sink on the other side near the TV. I thanked her and then got a few pieces of ice, reached over to pick up a National Geographic magazine and began flipping through it to find an article that interested me. Finding one about wolves in Canada I began reading, anything to distract myself. 15 or 20 minutes later a young black woman with thing braided hair extensions called me back to one of the exam rooms. I followed her to one of the ones on the left off the main hall and she took my vital signs.
I asked her to take the BP in my left arm because my right was in quite a bit of pain. It was the muscle that runs near the inside of my elbow to forearm that I’d injured brushing my hair in October the morning before seeing Dr. Trotti, the temporary neurologist connected with the sleep center.
As is often the case my diastolic blood pressure was high. My new patient forms and medication sheet sat on the small nook-like desk by a computer screen. The room was small and minimally decorated with a flat table to the right of where I was sitting and cabinets and a small counter on the left near the door. There was a rolling chair by the computer.
The nurse asked me a few questions, two which I choked out a rather weak and breathy response, told me she hoped I’d feel better, and said the doctor would be in shortly. My arm ached, my neck and back ached, even the muscles in my legs ached and I wished I were home, safe in my bed. I realized my watch had stopped but there was no clock on the wall anywhere. I read some more of the magazine and fiddled with the fur on my coat some more trying to quell the panic rising in my throat. Each minute that passed seemed like an hour.
Then finally there was a knock at the door. It opened and in walked a rather plump woman with a round face who looked almost nothing like the profile picture on Emory’s website. In the picture she was slim and looked no more than 17, but here in person she appeared to be somwhere in her mid to late 30s, rotund, her hair, a streaked blond like in the picture but with more body and cut slightly shorter, a few inches longer than shoulder-length.
She extended her hand. “Hi, I’m D.V.” (gentle hand-shake); so far so good. Although the information on the website said shed been trained in Bogata, Colombia she had almost no accent. Taking a seat in the chair across from me a few feet away she proceeded to tell me she’d read my record. (“Oh shit!”) I thought, and wondered which ones she’d read. I dared not ask, not wanting to open a can of worms. She asked me what brought me in and I recapped my symptoms and referenced what I’d written in the new patient paperwork. I gave her a brief rundown of the history and progression over the past 6 months and after just a few sentences she moved towards where I was sitting in my wheelchair and asked me if I could take a few steps, which I did, then sat back down.
I had already decided all I wanted to do was talk that day, but apparently she had other plans. I watched her carefully to see what she was going to do.
Taking out a penlight she shined it in my eyes. After looking at my eyes she asked me to look at her finger from side to side, up and down.
I tolerated that but in my own mind told myself that was going to be as much as I was going to take of anything of a physical nature. I didn’t know her and didn’t know her agenda just yet and the man who had hurt me with such exam had left a nasty imprint on my limbic system that I couldn’t shake no matter how I tried. I knew only too well that women were capable of great treachery as well even if they seemed kind on the surface. Gone forever were the days when I took people at face value. I tried that and saw where it got me. I wouldn’t be so trusting this time.
She took out her tools in a small towel and laid them on the bench and that’s when I freaked!
“Could we not do that right now?” I said, trying to sound pragmatic, not wanting to show just how panic-stricken I actually was inside. My relative composure completely went out the window when she pulled out the hammer. It was a smaller one than the one Dr. M. had used, and more of a rounded type, but nevertheless it was still a hammer. I was having a bad pain day and was in no mood for this. Every fiber of my being, every strand of my muscle was screaming (“No absolutely not!”). If I could have jumped over the back of my chair and run I would have at that moment. I backed away as far as my chair would let me, but she made no move to put it down. “I had a bad experience with a neurologist!” I blurted out in a last ditch effort to get her to back off.
“I’m going to do it on me; not directly on you” she said placing her thumb between me and the hammer. I was shaking my head no knowing that still didn’t change anything. Then seeing there was no escape I braced myself. Her thumb was little buffer for the impact and although it wasn’t near as hard as what I’d had in December it didn’t exactly tickle.
The primal self came back and took over. I felt like a trapped animal, drawing up and cringing at each blow as though I was going to come out of my skin. It seemed as though she was trying to hurry it up but it was as though I left my body for fragments of seconds throughout although on one level I was aware of my body struggling. I’m not exactly sure where my consciousness was but it seemed as though it was receded tucked as far away inside as possible.
It seemed as though every nerve and neuron was on overload.
Once she finished with the hammer she went about putting her hand under at the back of each knee and jerking up sharply and something similar with my arms. This elicited severe spasticity in all 4 of my limbs, and eventually the back-bend arching movements I sometimes have.
After that and pushing and pulling on various muscles she commented after she went back to her seat across the room that she thought it wasn’t so much weakness but spasticity that is the problem. She recommended physical therapy “to relax the muscles” and said she wasn’t suggesting regular types of exercises, but stretching. When I said that massage also helps she said that’s because it relaxes the muscles “and the mind”. I made a mental note that she put that in and hoped that she wasn’t using that as a sneaky way to make it all in my head as Dr.M. (AKA The Dark Man) had said.
Then she told me it’s possible that my Sarcoidosis could be causing this and the Dysautonomia if it has reached certain parts of the brain or nerves. She also said that it can affect nerves in the hip. I have been having pain in that area, especially the left hip and gluteus muscle. She seemed to be leaning strongly on the hypothesis that it’s my Sarcoidosis in brain and/or hip nerves and didn’t think the spinal findings and TMJ would be interfering with nerve impulses.
Then her demeanor turned kind of intense. “What are you taking for your Sarcoidosis now?”
“Benicar, off-label every 4 hours; the Marshall Protocol” I replied.
“You realize the medication is not working” she said rhetorically. “Have you been on Prednisone?”
“And what was the result?’ she asked.
“It wasn’t good. Extreme rage. I can’t risk that” I replied.
“If we do find that your Sarcoidosis is active and affecting the brain you really need to think about going on immunosuppressants”.
By immunosuppressants the dreaded heavy-duty disease-modifying agents like Enbrel and Remicaid were what she was referring to. Her eyes seemed to drill into mine. Time slowed to a standstill. I fought back tears and told her how I’d outlived many people I’d come to know in the Sarcoidosis patient community because I’d not taken that route. I saw too many people end up with complications that were as bad or worse than the disease, some ending up requiring transplants and pacemakers because of the damage done to their organs, only to die a horrible death. These people died way too young.
I told her I was afraid that after the 10 years I had to go off the Marshall Protocol it might have been too late for it to be effective when I went back on it and maybe that’s why it isn’t working anymore.
“If it’s affected the brain on this level then probably so. We need to do a gallium scan to find out, and I want to look at your MRI film from Piedmont.”
“OK, but they didn’t see anything. I’ve heard it doesn’t always show up in imaging anyway.”
“Yes, but it doesn’t always just show up and say “See, here I am.” It occurred to me that this was the first time I detected her accent.”If it turns out” she continued, “that it is your Sarcoidosis, if the gallium scan lights up anything we won’t need to do more tests, but if not we will need to. If it is your Sarcoidosis then you really really need to go on immunosuppressants.”
I could no longer keep eye contact. This was becoming too much and I fell silent, just waiting for it to be over. She was still looking at me when I glanced back. “Okaaaaaay???”
The words wouldn’t come out. I was in total lockdown for what seemed like an eternity but was probably not more than about a minute in actual time. It was not OK at all.
I think she repeated it about 3 or 4 times. The pressure was like a thousand pound weight. It was the same feeling I had when the nurse practitioner in Gastroenterology kept pushing me to have a colonoscopy when I can’t withstand the stuff you drink and its effects because of my Dysautonomia. You just know you can’t do something and you find yourself unable to speak.
I knew then that beyond these tests it was not going to work.
This was further confirmed by the fact that she is 9 months pregnant and going on maternity leave until May starting next week, that she is somewhat lackadaisical about responding to her patients on the patient portal, and that sometimes a nurse practitioner or another doctor sees her patients.
She didn’t seem like she was exactly going out of her way to win me over, and damn it, after what I’ve been through any neurologist worth their salt better be!
I’m all for accommodation in the workplace for women who want to have children, but quite honestly I don’t need someone who is distracted and divided right now, whose head is not in the game. I need someone who has the time to devote because what I’m dealing with medically requires it in order to do the job right. I also need a neurologist who truly gives a damn and respects my boundaries. I wish I could see Dr. W. She did, but it seems like I’m caught in a terrible catch 22; those doctors I feel comfortable with for one reason or another can’t or won’t do it, and I’m left with the ones who don’t get it and don’t care to.
When I got back up to the front desk the man who was dealing with release forms and orders handed me the physical therapy order. It wasn’t until I got home and looked at it more closely that I realized it didn’t reflect the mere stretching she’d told me verbally she was recommending. The interventions said “Gait training, Functional movement”, and “Exercise” (not specifying stretching). I’m tired, and I don’t just mean this week, this month, or this year, but existentially tired, and I need rest. Rest and true, genuine kindness.
The past week has been a series of gains and losses, trying to get as many things in order as possible, but having to wait for others to do their part, and aside from my pulmonary function tests, it’s going nowhere fast. I’m trying not to lose hope but it feels like just when some progress is about to be made it stalls because some key piece isn’t done (and it’s always something I can’t do myself, such as writing an order).
Updated paperwork for the Barium Swallow test My GP ordered in December is on hold, doctor’s notes faxed to Shepherd Center for my Wheelchair pressure mapping is on hold. Home healthcare is on hold until my GP can get a plan written, and somehow between the last two times we talked something changed and now he’s taken back his promise to write the order for the IV Saline to treat the Dysautonomia. Based on what? The documentation from Home Healthcare; nurse’s notes from taking about 1 blood pressure a week; only based on that, which of course isn’t enough to show anything. He has the records now from Piedmont with BP readings that were wildly dysregulated for 11 days, and I’m not miraculously cured, so I wonder, what gives?
Is he afraid that Dr. M. and his saboteurs will attack him for treating me when every symptom is not going on every minute of every day? Or does he think that Dysautonomia isn’t that big a problem and patients should just suffer through it? The constant fatigue, weakness, exercise intolerance, chronic constipation, constant thirst, pain, and getting cold 10 times a day and then hot when I add a layer of clothing, waking up feeling faint, intermittently purple feet, and unsettled GI tract beg to differ.
He says we’re at an impasse and I need to come in (which I’ll gladly do but his first long appointment isn’t until March and there’s lots to talk about so I don’t want to have it cut short and then have to come back). It’s alot to demand of my body to go to the doctor’s appointments I’m attending this week.
My GP thinks a neurologist could handle this better than he, but the truth is most of them don’t know anymore about Dysautonomia or Dystonia than he does. These are two orphan disorders that exist in a sort of no-man’s land. I seem to be cursed with these damned things. Why couldn’t I get something common and well-researched, but no, I always seem to get the health problems that nobody really gives a crap about.
At this point I would almost welcome a diagnosis of Parkinson’s Disease since everybody wants to work on that. Right now I’m laughing at the irony of it all, but give me a minute and I’ll probably be crying when it dawns on my just how screwed I am. I’m in the wrong part of the country for what’s wrong with me. The foremost experts are not at Emory.
I fear tomorrow like the plague. The very thought of seeing another neurologist, especially a general one I don’t know and has no reviews scares the hell out of me. She’s a woman and one would think women are more gentle and generally kinder than male neurologists but one can’t be too sure, as there are always exceptions, and as we have seen from Dr. H., sometimes women doctors can be very deceptive even when they seem to be on your side.
If any more harm comes to me at the hands of these doctors I don’t know if I can take it. I’ve been through enough already and it’s time that I get some support from a neurologist that values me and won’t treat me like I’m making this up or crazy, or some hypochondriac and doesn’t feel threatened because I can think for myself and be an active participant in my own healthcare. I do all this researching because nobody else will and if I don’t look out for me then who will? I have no spouse to have my back, no family that makes sure I’m safe, nobody else to go down to Emory’s Administration when I’m not treated with respect and dignity and demand that something be done. There is just me here, and a dog and a snake.
And now my GP is becoming paralyzed with inertia. My pulmonologist is being very supportive, but there are things he can’t do that my GP can and should do as the doctor who has known me for 12 years and has seen me at death’s door and knows that can happen again if too much in my body malfunctions. I am teetering on a very sharp edge between stability and instability and my body is still unpredictable. The only reason I’m somewhat stable right now is that I’m seriously hunkering down in my bed. We are just treating the symptoms with medications; none of which are disease-modifying, so there’s no telling what might happen. I don’t want to end up in the ER again and get abused or neglected like last time. They won’t understand, most likely, and I can’t take the risk.
The whole idea of Saline infusion is to be proactive and to stabilize the Autonomic Nervous System over time; not just to put out fires when someone is in dire straights like I was in November and December. This can prevent the need for emergency hospitalization if maintained. In an article written by Dr. Santa Maria, a Boca Raton, Florida doctor who regularly treats Dysautonomic patients in his clinic he says; “It is best to give saline preemptively on a regular schedule instead of on an emergency basis when a patient is already in the depths of their worst symptoms. Regular hydration can provide a sense of stabilization and normalcy for patients, allowing them to have more control over their bodies, health and ultimately—their lives.”
Dr. T., (the temporary neurologist I’d hoped would be permanent several months ago) has now agreed to see me for my Myoclonus and will refill my Keppra prescription but I had to make a follow-up appointment which isn’t until July; just a week before my consult with the out-of- state movement disorder specialist. I wrote and told her I wish it wasn’t so far away because I would like to discuss alot of these neuro issues with her.
Maybe there is something she can do to bridge the gap even if she doesn’t feel she has the skills to manage all the neuro conditions. Perhaps she can speak with the specialist on my behalf and help pave the way so that I won’t waste a trip up there and leave empty-handed.
I downloaded and took a closer look at the report of the cervical spine MRI she had ordered and interestingly it showed some foraminal narrowing at C5 – C6 and C6-C7 due to the bulging discs, and the one done at Piedmont hospital just a month later did not show that but had alot more degenerative facet findings on C2 through C6 on both sides. It just goes to show that alot of these test results are dependent on who is interpreting them, but it also makes me wonder whether degeneration can really progress that quickly in just one month (or maybe this is something other than degeneration they’re seeing and dismissing). To look at the two reports you’d think you were looking at two different patients.
The thoracic spine scan says “bulging discs noted @ L1-L2 w/compression of disc sac”.
Seems to me that with all those spinal findings and the TMJ it shouldn’t be hard to deduce that I have Dystonia. We’ll see whether this neurologist tomorrow figures it out. If she knows anything about Dystonia it should be evident to her. If not, then most likely she is not the right doctor for me.
As for the Dysautonomia it will be a miracle if she’s versed in that, as most general neurologists’ knowledge is limited to classic POTS at the very most.
I’m still looking for a silver lining in all of this but it’s getting hard to find one. I can only hope that some benevolent force greater than myself is watching over me tomorrow.