Thinking back on the past several months to trace the timeline of my fall from grace at Emory brings up uneasy correlations, ones I wish I didn’t have to see, but the truth is beginning to show its ugly face and boy is it ever ugly.
As awful as it is, I’ve always said that if a highly venomous snake is in the grass I’d rather know where it is rather than not and to step on it and have it bite me. This is one of those instances in which ignorance isn’t bliss; it can get you killed. I stepped on it and it bit me alright and now the venom is systemic.
It seems the electronic records are abuzz now with gossip, all of it unsubstantiated of course, but nevertheless treated as fact because of the fact it is couched as “professional opinion.” It is still libelous; make no mistake, and it is costing me in quantifiable ways.
After what’s happened to me I have to go on the assumption that there are some wolves in sheep’s clothing over there at Emory not acting in my best interest. There is plenty evidence now that bears that out. Now I know why Dr. B would not answer certain questions in writing and why he insisted I come in to his office before fessing up to his core beliefs, and at that it was just he and I in the room.
Perhaps he was the biggest false ally of all, but after 12 years one can’t so easily just shift gears and go “Oh well, so much for that” and go on unscathed. Of course I would have some feelings about that. Not crazy; just a normal part of the human condition when you discover that someone you trusted for 12 years has betrayed you in such a painful and treacherous way, somebody you trusted with your very health and life.
I went for 10 friggin’ years not asking for anything but to have my maintenance meds refilled, I’m not a frequent flier in the ER, and one year I literally couldn’t get my medications refilled by phone because I hadn’t seen him in a year. I came in at his request! He’s offered me stronger pain meds than Tramadol several times and I turned them down; so I’m not a “drug seeker”. There really is no valid reason for him to be managing my case as if he’s some sort of strange probation officer instead of my doctor.
And another case in point; just the other day when he’d stopped writing all orders it was he who wanted me to come in, saying I hadn’t seen him since my hospitalization at Piedmont.
I have not even really seen alot of doctors since the incident at Emory’s ER because they scare me now, but I forced myself to go to the follow-ups I had already scheduled months ago, and given the circumstances of my recent decline it is not unreasonable to increase the pace now. Very little in the way of testing or treatment has been done in the past 10 years, and even after I’d started developing new symptoms I stayed patient for the better part of a year and tolerated delay after delay, so how in the hell he is translating this into “You think you have everything” is beyond me.
I know now that in the context of his interactions with these 1-time neurologists that he was looking for things that would invalidate me. He just didn’t have the balls to come out and admit it and wanted the neurologists to prove his point that he harbored within himself for God-knows exactly how long.
I guess he was smugly self-satisfied when Dr. M tried to say I was completely out of my gourd with nothing neurologically wrong or faking it because then he didn’t have to do any work for me. That was why he didn’t seem to care that he was implicated by him as well, and why he had little or no emotional reaction when I told him what happened and how I’d been abused.
Maybe he’s one of those who also believes that waterboarding and the other atrocities performed at GITMO were OK because the ends justify the means. Maybe that’s why he failed to protect me when I went to him for help. Maybe secretly he thought I deserved what I got and that I must be a bad person.
And now that Dr. V (despite her flaws) is validating that there is an underlying neurological condition he doesn’t like that because he can’t just dispense with me and write me off as an “hysterical” patient. There is clearly an agenda to avoid doing his job. That is crystal clear after the conversation in his office the other day where he discounted my BP records from Piedmont Hospital when they were in black and white not subjective, but objective data!
He’s right about one thing. I am very intelligent (and because I am, people may fool me for a period of time, but they can’t do it forever). Eventually I will find out if they are screwing me around. All the evasiveness in the world isn’t going to give them a stone to hide under.
I carry several diagnoses already documented in their system that are incurable, chronic illnesses and conditions; Sarcoidosis, Fibromyalgia, Central Apnea, Biot’s Respiration, and Myoclonus. These have been confirmed and reconfirmed.
Gaslight as they may, Emory and its bad actors are not going to succeed at this bullshit forever. I am a human being, damn it! I deserve the same dignity as anyone else and I do not deserve medical neglect nor abuse! This is not unreasonable for me to expect.
So what if my case is complex! I never asked for that. I didn’t choose it. One can only play the hand their dealt. I can’t make my body do anything beyond its capacity and it’s not my fault they (the doctors) can’t figure it out and that it’s taking a long time. Beating me up over it sure isn’t going to solve anything. It only adds insult to injury.
When I think back on it, it seems that he started behaving differently toward me in September or early October when he was supposed to refer me to a specialty neuro clinic and oddly the department and the nurse from said specialty clinic told me there were things missing from the record. They made it sound as if pages were missing but it all makes sense now.
Dr. B had made a comment to me on the Patient Portal about what the nurse in the clinic told me about missing records “I find H.D’s explanation lacking. That’s all I will say.” I had a pang of visceral fear when he said that and knew something was up but just couldn’t figure out where it was coming from.
He must have set it up to fail because he thought these things about me then. Apparently he was a wolf in sheep’s clothing although I did not know it at the time. I’d told the other clinic that I trusted him after 12 years and that if he told me he’d sent a proper referral I believed him. Too bad that trust didn’t go both ways.
Interesting that Dr. T’s (temporary neurologist in the sleep center) referral sent to the same clinic had stuff “missing” too. Hmmm. For a time I’d wanted to see her as my regular neurologist since she did hit the nail on the head in treating my myoclonus with Keppra, but now I’m not so sure what to think. This is all beginning to look like a circuitous game of “telephone” but a very duplicitous one!
Somehow her reason for not taking on my case fully being that she was “this sleep person”, claiming she wasn’t qualified enough but then initially wanting to refer me to yet another general neurologist, though with her background in movement disorders they’d probably be less qualified than she, just didn’t add up.
I remember back in September I thought he’d written an appeal to Maximus, this external agency that handles 3rd stage appeals for Medicare Part D. I was applying for an off-label medication to be covered on my insurance and I asked him about it and he said he’d never heard back.
Then I sent a letter to the Secretary of HHS and told her how difficult to get off-label treatments covered and she said she’d contacted Maximus and that neither they nor Humana (the Part D private carrier) had any appeal in their system. I called both and spoke with representatives at great length and both agencies scoured their database and all they found was my earlier appeals that I’d filed myself.
That was when I started to suspect something wasn’t quite right about his story. Now I am almost positive he wasn’t honest with me about sending the appeal in at all.
I would sure like to see the clinical notes of these doctors. From now on I need to get a copy of all clinical notes when I leave each appointment. The only trouble with that is that these doctors can still chart on me afterwards and I don’t know whether I’ll have them all.They can also edit their notes after I leave (which is not good).
Having worked officially as a patient advocate I know alot of the “tricks” they use, and just how damaging irresponsible charting can be to patients. It can literally make the difference between getting necessary treatment and timely testing, or not.
This also brings me to another uneasy question. Why did doctor B stall on sending Shepherd Center his doctor’s notes? Was it because he’d been back-stabbing me in them and it would be clear to anyone who read them that he was not in fact really trying to help me?
Furthermore, why has he been leaving all the legwork to get these evaluations to me to do when he refuses to treat me himself and wants these other doctors to be the ones to take responsibility for my care?
Anyway you slice it, there’s something fishy in Denmark.
Maybe my original reading of the situation when I came into Emory’s ER was closest; that the whole Emory system had failed me, and still I sit here disabled and minimally treated, things still moving at a snail’s pace, but worse now because on top of it I am finding that I really have no support system. It was just an illusion.
I’m sure you’ve heard the phrase “beware of false idols”. Well same could be said of those people in your “inner circle”; those in your support system.
As chronically ill people we are often too tired, depleted, and focused on obtaining the practical help and services we need to feel better and to get better to clearly discern whether those in our support system are truly supportive and whether they are helping or in fact hindering or hurting us.
We may in our quest to feel better not see (or ignore) signs that others who seem to want to help in reality have agendas that run counter to what we want for our lives, and their attitudes and biases might even throw a monkey-wrench into our goals and plans.
When that person is a doctor or other medical professional, while such people may have been helpful initially there may come a time when they cease to be or when their true colors come out and show you who they really are versus who you thought they were at a very crucial time in your life.
Be kind to yourself: Sometimes for various reasons you may not recognize when someone in your inner circle is hurting rather than helping you, not respecting your wishes and boundaries, or otherwise acting in ways that end up detracting rather than adding to your health, well-being, and happiness.
You may start to see (or feel) that something isn’t quite right but brush this off as paranoia, telling yourself not to look a gift horse in the mouth, and you might find yourself hanging onto people longer than you should because you’re afraid you may be going from the frying pan to the fire.
A false ally can violate your trust, jerk you around emotionally, and leave you confused between what your heart versus your head tells you. At best they can be ineffectual and unhelpful, but at worst, a snake-in-the-grass who has the capacity to sabotage your health and your life. If this person is a doctor or other health professional and their actions are significantly hurting your life you may want to report them to their supervisor, the head of the department or facility, and in some cases, the medical licensing board. You might also decide to report them to the Better Business Bureau.
Impaired professionals are sometimes very toxic people and not fit to practice due to their own personal biases and problems and are unwilling to voluntarily work on them. In such cases repeated attempts to work things out with such a person are unsuccessful and continuing the relationship becomes untenable and anti-therapeutic.
Each person has to use their own judgment as to what to do when they begin to see signs that interactions with these helpers are not going well and put the necessary replacement infrastructure in place, but if the situation becomes so injurious that these people are doing more harm than if you had nobody fulfilling those duties/needs you may need to cut them out of your life for your own health and sanity even before you have better supports in place, then look for those afterwards.
Here are some distinctions between true allies versus false allies
True Ally Versus False Ally
True ally: you feel empowered and supports your confidence in making your own decisions. You feel happy, relaxed, inspired, comforted, and hopeful for the future.
False ally: you feel deflated and/or defeated, powerless, intimidated, and/or irritated after speaking with them and begin to doubt your own perceptions, feelings, and decisions.
True ally: you feel secure in the fact that they’re there for you and will be for the duration.
False Ally: you have the growing feeling that their support could end with little or no warning or provocation, and it begins to feel conditional, they become increasingly unreliable, passive-aggressive (what I refer to as “weasel meanness”); they “forget” to do tasks they promised, do them very slowly, need repeated reminders, or don’t keep their word, let important tasks like writing orders fall through the cracks, and leave you in a jam.
True Ally: Communication is two-sided and the person gives you confirmation that they agree and are supportive of your game plan, is happy for you (and may even offer to help unsolicited).
False Ally: What they say to you directly doesn’t seem to add up with what others hear from them about the same interactions with you, or you find evidence that they didn’t do what they said they’d do to help or support you.
True Ally: Their written and verbal communication seems warm and open, they smile, make eye contact, and answer questions fully and directly, seem interested in what you have to say, and respect your wishes. They point out and focus on your strengths and assets and seem happy to see or hear from you.
False Ally: Their written and verbal communication is evasive, stilted, legalistic, guarded, incomplete, needs repeated clarification, and communication with them seems inordinately hard even after repeated attempts. They don’t remember important facts, and seem uninterested or irritated by your requests/questions, and/or body language seems inconsistent with what they say verbally; i.e. they like you and want to help yet roll their eyes, cut you off when you talk, or under-react to, gloss over, or minimize the importance of your pain (physical or emotional).
True Ally: Willing to go to bat for you, recommend you, stick their neck out, defends you against attacks, takes steps to keep you safe, unequivocally “on your side”.
False Ally: Seems luke-warm or lack-luster in their endorsements of you to others, unwilling to stand up for you, conveys they believe others over you when you’ve been wronged or says directly they don’t believe you, questions your credibility directly or indirectly.
True Ally: Understands and appreciates you more over time, positive interactions increase, thoughtful and seeks to make thing easier for you given your individual circumstances, makes statements that convey that they care and feel warmly about you.
False Ally: Appears tired of you, less empathetic, seems uninterested and even annoyed about your individual needs, unwilling to put much time in, seems under-concerned about your condition and does nothing to reduce your work-load and stress level, and makes insensitive or sarcastic remarks referencing you in a bad light, takes an outright oppositional stance to helping with things in ways you request, even walks out of a room while you’re still talking.
I had what may be just the first uncomfortable conversation with my GP yesterday, and it kind of went like this;
Patient: I brought you a whole folder with bullet points and everything.
Doctor: Oh Great! (looks through the list of requests) Can do this one – send doctors notes to Shepherd Center. Now what exactly do you need in the way of accommodations; just so I can document (I’d told him in great detail already via the patient portal. Clearly he missed the part where I said it took too much energy to remind him over and over again because I’M ILL, OK????).
Patient: You can see here that I have to prop a pillow in my wheelchair and there’s really no neck support and that doesn’t really work so well, the center of gravity in this chair is very small focused all on my butt and my weight needs to be evenly distributed because sitting in this thing aggravates the spasticity and my gluteus muscles and trapezeus muscles, the muscles in my legs, and neck and back get really stiff and I really need to be able to be in a reclining position because gravity just kills my muscles and it’s agonizing.
Doctor: OK. Well here’s the thing. There’s the objective and the subjective (this is when he pulls out a piece of paper and starts drawing a circle and then another circle around that one with a bunch of s shapes floating in the larger one). Dr. V. did feel you have something wrong neurologically (motioning to the inner circle).
Doctor: But…(as he starts to motion towards the outer circle), she feels that you have emotional stuff too going on out here. So since several neurologists have said things about emotional stuff I really have to only look at objective data like tests and that kind of thing. With these neurologists feeling there’s emotional stuff going on your patient reports of symptoms; things such as nausea, spasticity, pain etc. can’t be taken as a given now. The fact that Dr. V. says that you do have something neurological going on isn’t enough. Until you have a neurologist that says there’s nothing emotional going on I can’t accept your word about these things. That is the challenge (he interrupted himself) No I really don’t know if that’s possible (implication being he would never believe me no matter what). She doesn’t know how much of it is one and how much is the other to be able to tease that out.
Patient: Aren’t you setting up an impossible standard here? My Piedmont vitals record clearly had objective data showing the Dysautinomia. What’s wrong with that?
Doctor: Well that’s subjective. I have 40 pages of blood pressures from home health here that have normal ones (which I kind of doubt since the nurse was taking it just once or twice a week and the period was about 6-8 weeks I think). The only test I know of is a tilt table test (he wrote down “will consider tilt table test”).
Patient: How is that subjective? It’s raw data! That’s ample proof! I gave you another copy with asterisks to the left of everything flagged! (It became crystal clear at that point that what he really meant is because it was mailed to me and provided by me it must not be legit. Well he can order his own copy sent directly to him if that’s what he was implying. Things were becoming insulting at that point in the conversation). Taking blood pressure one time once a week isn’t going to pick it up!
Doctor: I know. Modified Barium swallow; I can do that. TMJ MRI; can do that. What kinds of problems are you having that you need the MRI for? (also a repeat of what I put in writing on the patient portal).
Patient: It’s dislocating to one side or the other and sometimes cracking when I open my jaws.
Doctor: OK. IV Saline; No can’t do that since there again the other symptoms besides blood pressure you’re reporting are subjective. I’ll contact Daria myself to see what home healthcare can provide. Vascular testing and testing for Mast Cell Activation is pretty much bogus; No. IVIG; your IGG level was OK so insurance probably wouldn’t pay for that.
It went on like that for awhile; the upshot being that he was nitpicking on every single thing and as far as treatment absolutely nothing new came out of it.
I still can’t get over the fact that he made that statement saying he couldn’t take my word for any of my subjective symptoms now that he thinks I have some emotional thing on top of the neurological thing.
So in other words I’m being considered mentally incompetent? Last time I checked that was considered stigma and discrimination and that’s a human rights issue!
I had told him that yes I may have secondary trauma due to being abused throughout this process, but it’s nothing that necessitates this sort of gate-keeping and not a reason for him to not take me at my word.
In that case I guess I can skip all the paperwork I’m supposed to fill out periodically asking about my symptoms since he doesn’t believe me now. Apparently it’s not valid because it comes from me.
I came home and have been really crushed by this whole thing and I don’t know how much longer I can tolerate this. He is going to give me a mental illness pretty soon at this rate. I’m through proving myself. If he wants any more proof he can order more tests. Otherwise I expect these things done.
This is totally humiliating and I have done nothing to deserve this level of cynicism.
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.
Last week I saw my Pulmonologist. Although I was nervous after recent events that he would have doubts about me I was pleasantly surprised to find him just as warm as ever and I think in fact that his learning of the ER debacle only cemented our bond further. Much as these cliquish people would like to see all my doctor/patient relationships destroyed they are not getting their wish. My pulmonologist was hoping I would have already gotten in to Dr. G’s clinic by now, and was appalled at what had happened to me at the ER in December.
This is the one doctor who the evil Dr. M. and his group of bullies cannot screw around, intimidate, nor manipulate, as he is very meticulous about his documentation and he backs up his diagnoses with good, hard data. He is not arrogant (which is nice), but he has the courage of his convictions and is genuinely a good guy who really wants to help his patients. I told him I figure my chances now of ever getting into Dr. G’s clinic are most likely blown due to the actions of those ER doctors and their libelous statements. He said he was not so sure about that. Seriously, I could just hug him right now!
He is the one doctor whom none of the 4 person wrecking crew tried to attack; they knew that if they dared try challenge his work that he would mop the floor with them, as his positions are backed up by 3 sleep studies and he’s pretty iron-clad.
What they didn’t realize is that Dr. T., who is a perfectly good neurologist (but works in the Sleep Lab) looked at those sleep study tapes in order to diagnose my Myoclonus. She, unlike Dr. M., does have a background in Movement Disorders and it was not hard for her to diagnose by seeing the movements in action. Dr. M. and Dr. T.T.J. (neither of which have published in medical journals had arrogantly decided to disregard Dr. T’s diagnosis based on the gross tests done at Piedmont Hospital. I guess they underestimated her. She has published on sleep disorders as early indicators of neurological disease, by the way.
Nice try, dufuses, but it’s not always due to a structural lesion. It can be neurochemical or electrical in origin and still be very real.
Sometimes doctors in the ER really make fools of themselves when they think they know everything.
My Myoclonus continues to this day (and not only upon falling asleep, although mostly. It also manifests in my shoulders when I get too cold), and it has responded to Keppra at 1000 Mgs./day, reducing the severity and how long it goes on quite a bit. It was Dr. T. who put me on it, and Dr. W. (the admitting neurologist at Piedmont) who increased the dosage to an optimum level. Although it’s not a cure, the fact that it vastly reduces it tells us that the drug is acting on some pathway in the brain. It is highly unlikely to be placebo effect or chances are by now I would be back to being kept awake until 7 AM each night. Thankfully I am not.
It’s been more than disappointing; the non-advocacy provided by Emory’s “Patient Advocate”, T. J., who showed her obvious bias after only our second phone conversation, and still has not answered my questions entirely regarding whom she asked what during her mickey mouse investigation, but I believe that eventually I will be vindicated and those who sought to discredit me and sabotage my healthcare will suffer the consequences of their malicious actions, and so will she for being so dismissive of my very legitimate grievance.
I have had shortness of breath on and off throughout the appearance of these neuromuscular symptoms which seems to come in clusters and then I don’t have it for a few weeks or months, but then it comes back. I’ve had it several times over the past few weeks, and again tonight while sitting upright.
Tomorrow morning I go for some pulmonary function tests which will likely add some more data which will help flesh out my condition further. Dr. M. and his bunch of groupies are probably not capable of understanding the significance this has in neurological disease or at best have a very basic understanding of it, but I’m pretty certain it will completely escape them as it applies to a condition as complex as mine. If they are reading this post I will leave them to vex over it all night.
On Friday I will go into the Lion’s Den (the dreaded Emory General Neurology Department) where I have an appointment with one of their neurologists I’ve never met. I was going to cancel it, as this woman has no reviews online (good or bad), and I don’t like going in blind after what happened, but on second thought figured even though it could be a trap given Macdonald’s connection with the department head, there are ways in which it could actually end up being helpful. (I won’t elaborate on that just now as I don’t want to show my hand to certain people who may not have the best of intentions). I will see what this woman is about and go from there. I just hope she’s not sneaky like Dr. H. and hope she’s not rude or a cold fish. My trust has been violated so I will not be so quick to believe her words and intentions as I might have been before the traumatic event happened. She will no doubt have to earn my trust. First hint of deceptiveness or working against me and she’s history.
Mayo Clinic is a no-go. After my initial inquiry at the particular location I checked on it turns out that they have nothing available until next January and so any patients with conditions of a neurological nature are not being booked at all right now.
My GP is finally coming to terms with my Dysautonomia after he received the erratic BP readings from my Piedmont records (which weren’t initially included, but housed in another department), and realizes that I am probably not going to feel any better until it is treated with IV saline infusion. Home healthcare is willing to send a nurse out to do the infusions but in order to prevent infection on an outpatient basis a port (central line) will need to be put in my chest; a minor surgical procedure. Although this is not a cure it should help me feel better and get my autonomic nervous system to work more efficiently, as it did in the hospital.
Right now I have no energy, my pain has gotten more frequent and intense, I’ve felt faint more often lately, my constipation is still an ongoing problem despite being put on Linzess, it’s a struggle to hold myself up against gravity, and I feel as though I need to sleep 15 hours for every 1 hour of being up even to go to a doctor’s appointment. I just feel crappy all the way around. Increasing my salt intake and drinking ice water constantly has not been cutting it and each morning I wake up feeling so dehydrated I can hardly tolerate it. Ravenously thirsty, and as if my kidneys are toxic; head-achy and back and core achy.
As of yet the order has not been written, but he has agreed to it, so I think now it’s just a matter of when it will be written, as he knows I can’t go on like this forever. It is taking alot out of me just sitting up long enough to write this post. If it’s the wrecking crew he’s afraid of then screw them in the bootie, I say! The treatment options I pursue are my choice. Every patient should have the ultimate say as to what is and isn’t done with their own body.
There really needs to be a new Patients’ Bill of Rights drafted to address these types of issues. I’m sure there are many others who are going through similar struggles as I am. I’m going to be voting for Bernie Sanders in the upcoming Presidential election as I believe he most closely exemplifies the principles I stand for surrounding healthcare. I have written the Dept. of Health and Human Services periodically to bring some of these issues to their attention as they impact patient self-determination in ones healthcare.
To give input on healthcare topics important to you, write or call them toll free;
U.S. Department of Health & Human Services 200 Independence Avenue, S.W. Washington, D.C. 20201 Toll Free Call Center: 1-877-696-6775
The current Secretary is Silvia Mathews Burwell
If your healthcare rights have been violated, in addition to filing internal grievances with the facility, state facility regulatory agencies, and if the offender was a doctor, the state Composite Medical Board (as I did), you can file a Federal grievance through the Office for Civil Rights . I may consider doing this if the hospital continues to leave the libelous charting up on their electronic records system posing as “professional opinion”.
There are several online forms broken down by type of complaint such as HIPPA, Patient Safety/Confidentiality, and Assurance of Compliance
I had an interesting discussion on Youtube with a medical resident, and as you know if you’ve been following my blog regularly I am very interested in opening the minds of new doctors just getting their feet wet in the field of neurology. This guy was educated in the typical way most neurology residents are taught and after viewing a woman’s video who was having facial spasms while she was watching TV he posted that he thought her disorder was “functional”.
The model used currently to differentiate “functional” from organic neurological disease/disorder is usually to check whether;
1) symptom patterns coincide with known patterns associated with “organic” neurological diseases/disorders.
2) a presenting symptom or group of symptoms stops during a period of distraction, thus appearing inconsistent.
(Keep in mind that distraction tricks are often used by patients with established Dystonia not considered “functional” such as touching the area involved or nearby which have the same effect of disrupting faulty brain signals and often do stop the symptoms temporarily).
I responded back that such a mindset does a real disservice to patients and often stands in the way of early detection and treatment of a neurological disorder.
He posited to me that there is a real category of Somatoform Disorders at the same time acknowledging neither Psychiatry nor Neurology wants to deal with those, but likens the stigma to that of diseases such as Major Depression or Bipolar Disorder. This was my response to that statement of his;
“Your second sentence spells out what makes it different from Major Depression or Bi-polar disorder. Psychiatrists don’t brush off those two conditions and they don’t confuse those with “feigning”. A functional diagnosis is way more stigmatizing because unlike the two mood disorders you used as examples they don’t believe functional diagnoses have a biological basis. There are imaging studies and neurotransmitter studies pointing to an underlying neurochemical basis for mood disorders, and now genetic research linking certain genes to them. The same has not been researched in those categories labeled as “functional”.
When you really think about it just about all the “mental” disorders are now thought to be brain diseases (AKA; neurologically based). That is exactly why psychiatrists prescribe medication for them. There was a time when Schizophrenia was believed to be behavioral and caused by bad parenting. As long as doctors treated it accordingly patients didn’t recover. It was only when enough research money was put into it to investigate its biological basis that advances were made and patients improved through more targeted medications. Dr. E. Fuller Torrey was instrumental in uncovering alot of the biology behind that disease. He continues to research now through a private research center and is finding out that the disease is not only characterized by a disordered Dopamine receptor system, but that there are intracellular pathogens involved in its cause which are not detected by commercial testing methods. While I must state that I disagree with Torrey’s focus on involuntary commitment of such patients, he was one of the first to hypothesize and quantify with research that Schizophrenia is in fact a true brain disease, removing it from the realm of “it’s all in the patient’s mind.”
I would bet that if enough research were put into studying what they call “functional disorders” scientists would find a biological/neurological basis for it. I’ve been reading lots of research papers and I think I have an idea what it really is. If you read some of the latest studies on Fibromyalgia and on Dystonia you’ll be very intrigued at what you’ll find. Apparently there are studies that have elucidated some very good data suggesting that these disorders involve faulty signals and neural pathways.
The same areas of the brain involved in emotions are activated in disorders such as Fibromyalgia, Chronic Fatigue Syndrome, and Dystonia as well as other disorders currently called “functional”. This doesn’t mean these are “mental illnesses” although people can experience mental symptoms (but not always). It merely means that the signals coming through those brain regions involving pain and/or movement are often impaired and become crossed with emotion-bearing pathways.
If you are going into either the field of Neurology or Psychiatry I hope you will dedicate yourself to these “gray area” diseases/disorders and look for these quantifiable markers. You can do that with PET, fMRI, and a number of other state-of-the-art imaging methods, as well as on a more micro level look for genetic and neurochemical markers involved. If you look and put in the time you will find them eventually (and maybe make a name for yourself in the process if you should publish your findings in established medical journals).
Taking on such an endeavor would go a long way toward doing justice to these patients with such orphan diseases/disorders and remove the stigma associated. I’m sure in time researchers will identify a physical basis, and targets will be found for which they can develop medications that really work (as long as doctors care enough and are unbiased enough to look and believe patients are worth it).
I really believe “mental” as opposed to “physical” illness is an old paradigm and that the future of science will bear that out as more research comes out. Think of a computer as a model for instance; no software can function properly in a computer if the hardware is dysfunctional.
Autism is a human model that illustrates this quite well. While you may or may not find any structural differences in the brain, it is known and pretty widely accepted that it is a difference in the way these people are “hard-wired”. It is listed in both the DSM and the ICD. Although it has “mental” or “behavioral” manifestations, it is not a “mental illness” per se, but a neurodevelopmental disorder. Autism is also associated with disordered brain signaling/processing of sensory input; same as the diseases/disorders I mentioned in my 4th paragraph. You will notice that many interventions recommended for autism are not covered by health insurance. This is a particular type of “othering” supported by insurance companies.
The same goes for delineating “Dental” from “Medical” for purposes of health coverage. Take a look at what some dentists are doing for people with movement disorders (for the most part private pay and unfortunately out of reach of many most in need who could really benefit). Look up Dr. Stack/Dr. Jeffrey Brown, Demerjian, and several others doing some very cutting edge work in that subspecialty.
In Dystonia, look up Juaquin Farias PhD. and his work in neuroplasticity. He is Director of the Neuroplastic Training Institute Toronto and adjunct professor at the University of Toronto at the Music and Health Research collaborative. He started out working only with focal dystonia in musical and performing artists, but now has had some success with Parkinson’s patients.
All of these things should be under the same umbrella as “physical”. The insurance industry has alot more of a stake in keeping these divides than most people realize because they can justify not covering them or charging higher premiums for them as add-on coverage. The way these things are structured and coded is often for their benefit, not the benefit of patients.
Follow the thread and see where it leads. I think you will be surprised that much of what you’ve been taught in medical school doesn’t line up with the latest research.”
So far he has not responded, but maybe that gave him food for thought and the idea will grow on him once he thinks more deeply about it later.
One very important point I forgot to make in my response to the neurology resident is that the woman watching TV was distracted and yet her facial movements continued anyway. This is definitely not consistent with a “functional” etiology, as watching TV is a very absorbing activity often causing a person to tune out all else going on in the environment. (I will add that point to the thread next chance I get).
Perhaps where doctors tend to misinterpret a patient’s symptoms as “functional”, especially in such disorders or diseases involving brain signaling/processing or in such cases in which a condition is caused by intracellular pathogens too small or evasive to be seen by most commercial imaging techniques is that one may have a disorder that involves faulty brain function yet it is not “functional” in the derogatory sense of the word, but is in fact truly neurological and can be quantified in ways other than structural.
In a study published in the medical journal Current Opinion in Neurology in August 2013, the hypothesis of authors, Mark J. Edwards , Aikaterini Fotopoulou , and Isabel Pareés is that attentional processes in the brain are most likely disordered.
An experiment using “Functional” Distonia patients versus familial Dystonia patients yielded the following results;
1) Both groups had increased bloodflow in the right dorsolateral prefrontal cortex to an abnormal degree
2) In the “Functional” Dystonia group bloodflow in the primary motor cortex was decreased and blood flow in basal ganglia and cerebellum increased.
3) The reverse pattern was found in the genetic Dystonia patients.
The big picture suggests that both groups of Dystonia patients have abnormal prefrontal involvement, but that those patients labeled “functional” may have additional abnormalities in frontosubcortical circuitry which regulates motor attention and likely surrounding limbic areas .
The authors of the research paper also hypothesize that certain movement patterns may become ingrained by a precipitating trigger (often physical in nature) which the brain erroneously associates with certain abnormal movements. Although this processed information is converted into abnormal movement it is not “hysterical conversion disorder” nor is it purposely initiated by the patient.
The article illustrates beautifully that what is often mistaken for a psychological phenomenon is actually a disorder of brain processing, encoding, and wiring!
So patients; next time you are told by a doctor “this is all in your mind” point him/her to this research (listed in the last link I’ve provided at the bottom), or better yet, print it out and hand it to the doctor.You are not crazy, and don’t let anyone tell you that you don’t have anything physically wrong! It is time that clinical practice caught up to the most up-to-date research and throw out the old outdated concept of “Hysterical conversion /Somataform disorders”. It is no longer relevant, and only adds insult to injury preventing or delaying your getting the real and compassionate healthcare to best treat your neurological condition.
And to doctors; Remove that discounting “Psychogenic” label from your mindset (and from your vocabulary). It’s not helpful to you in rendering effective treatment and it does nothing positive for the doctor/patient relationship (which is a necessary bond to maintain if you want to be of any real service to those you treat). If you value your reputation you must extend the same courtesy to that of your patients’ reputation. Do not chart things that invariably cause other doctors (who may ultimately have a pivotal role in your patients’ best outcome) to question your patients’ credibility. These patients’ lives are hard enough without this added burden which not only causes emotional distress but can also be quite costly to the patient financially to correct. It’s important to remember that those people in any field who’ve made the biggest strides were individuals who dared to challenge the status quo. Why be just an OK doctor, playing it safe following trails blazed for you by others when you can be a great doctor by blazing trails for those that come later! If you choose the latter your patients will thank you and you will have contributed something valuable to your specialty!