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
The cover picture I chose for this post is a sign I keep on my wall as an affirmation, visible from my bed. In the light of all that’s gone on lately I am struggling to hang onto my self-esteem and have periods of self-doubt in which I begin to wonder. You might have noticed that the letters aren’t straight; that they veer up from left to right. (More about the significance of that later).
First, I received a letter from Emory’s Chief Compliance Officer, A.A., stating they refuse to ban the offending doctors from access to my electronic records (she says “for purposes of billing”). I had to laugh at that one, as it seemed the epitome of irony that they should even think about having these morally sick and impaired “professionals” paid by insurance nor by any source for that matter after how badly they mistreated me. Emory is out of its collective mind if they think these people should be in any way rewarded for abuse and neglect! If the hospital wants to stand by these criminals then they can just eat the cost as far as I’m concerned, and I’m actually considering sending each of the 4 doctors a bill of my own for wasting 9 or 10 hours of my time, for the mistreatment (physical and psychological) and failure to render aid, and for the libel that still sits in my chart because of their malice and irresponsibility for which I will have to incur additional costs to seek specialists out of state.
Some patients have started billing doctors who are late just like they do with late patients, so that gave me an idea that I should do the same for how these people compromised my care and are now causing a delay in it because of their actions (not to mention the intentional infliction of emotional distress inflicted by Dr. P. R. M. when he administered his interrogative neuro exam). The guy is clearly a narcissist and scouted me as someone he thought would make an easy victim because he knew I’d been abused as a child through Piedmont’s social history record. Like any predator he saw an opportunity and he took it. He gave a phony (non)apology to the “advocate” to pass on to me, saying “I sincerely apologize that you weren’t satisfied.” Now that’s just gross!!!! Ewww… Why would I be??? He was beating me! Sorry bud, but take that somewhere else. I’m not into that!
What I hadn’t anticipated was just how much of this approach was being adhered to as a “team” by all 4 doctors and just how duplicitous Dr. H was in the organization of my “treatment plan” while in the ER that day and evening. I was not thinking “conspiracy” when I was there, believing that each person was acting separately on their own as individuals, but now after receiving the letters from the “patient advocate” and Dr. H’s manager I now know that’s actually what it was; a conspiracy to discredit me (probably because I was expressing that Emory had moved too slow thus far in getting me to the clinic that could help me, and now I was severely disabled, and I guess they didn’t like dissent). If I’d been the mental case they were trying to paint me as I would have been “paranoid” (in their eyes) and would have picked up on the fact that their approach to me was organized, but to the contrary, I was entirely too trusting. I believed everything Dr. H told me and totally fell for her trick; her phony kindness. I believed she’d prevent anyone from hurting me and the whole time unbeknownst to me she was setting the stage for me to be hurt. Trusting too much (and the wrong people) indicates something else (for which I am arranging an assessment as soon as a particular expert gets on the panel to accept my insurance in about 3 months).
To this day I have a hard time aligning my emotions with my logic when it comes to Dr. H, and that’s scary. The others I can work up a good firm anger at, but her; I just feel profoundly hurt by. What she did was so sneaky that it confused me. Part of me still wants to work it out with her but my logic tells me she’s not a safe person. She hasn’t emailed me again and I guess that’s just as well, although I wish I would have gotten an explanation from her directly (even if she was going to lie) instead of her hiding behind other people like a coward to do her talking for her. She owes me that at the very least.
I realize now that this vulnerability has caused me problems with others I’ve known in the past who were two-faced and in the end totally took advantage of me and tore my heart out. I need to close this gap as soon as possible, but how does one do that and still let the good people in whose kindness is sincere? How does one not become jaded and start questioning everyone’s motives? I naturally tend to take people at face value and I kind of like that about myself, but it has bitten me in the butt a number of times. I sure hope this is something I can do something about and that I’m not forever broken in my ability to tell the difference. Now that all false friends have left and I have a clean slate this is a big thing. I don’t think I can survive another hurt like this. I need to get it right the next time I do trust someone.
Getting back to the topic I brought up earlier about the sign I have on my wall; I am thinking that what I have may be generalized dystonia of some sort and possibly part of a larger syndrome. Last night I watched an interesting speech on Youtube by Dr. Steven Rich, a movement disorder specialist about Atypical Parkinsonian Disorders and found out that in several of those, people have Dysautonomia. He says that in early stages of Multi-system Atrophy for instance, people can have falling within the first 6 months of symptom onset, difficulty getting up from a sitting position, a stiff gate, and symptoms such as rigidity or spasticity, other upper motor neuron signs, and Dysautonomia. Apparently some people are misdiagnosed as having Parkinson’s disease or not diagnosed at all because brain scans can look normal. They don’t always show findings. Often these conditions are made by clinical diagnosis and somebody who knows what they’re doing can put 2 and 2 together from the group of symptoms a patient has.
I’ve been learning also that Dystonia can be primary or secondary just as Dysautonomia can. I’m finding out that my MRI findings may be alot more significant than doctors who read them knew; that C1 and C2 vertebra misalignment and TMJ problems are often indicative of Dystonia and that I may have had that since I was a child in my neck and then as I got older it progressed to the other areas of my body. I’ve noticed for awhile now that my head is often cocked to one side and the sign on my wall slanting upward corresponds with the way my head is positioned. It’s very difficult for me to write straight. I’m always needing to straighten my shirt collar so it is centered on my shoulders because it tends to slide over to one side because my shoulders are tipped one slightly lower than the other. Also tonight I notice that my whole face is off-kilter; jaw, mouth is crooked, nose, and the way my head attaches to my neck is off.
My eyes which I had surgery on a number of years ago because they wander outward are now slipping really badly. I definitely don’t look quite right.
This past year my Dysautonomia has been worse than ever before and I’ve had alot more near fainting spells than I’ve ever had, the colon spasticity didn’t start until 2015 but I’ve been chronically constipated for years, and then finally at Piedmont hospital they documented the blood pressure instability. I faxed those records to my GP that I had to obtain from another department, and they were quite erratic.
Something else odd I’ve noticed happening in the past few weeks is that there are times when my feet get purple or blue for no apparent reason. They don’t feel different, just change color, and it often happens when I’m sitting down on the shower bench. Here are some pictures of what it looks like but they were worse than that before I dried off and was able to get my camera. Also the flash makes it not show up as dark as it actually is, but you can see it somewhat.
In this picture you can see the left foot still pretty purple all over, even down the big toe before it started going back to a more normal color, but the top of the right one had already changed.
Over the past week I’ve had several episodes of urinary urgency which don’t seem related to a bladder infection but most likely are from Dysautonomia. One of them today came on when I was in the kitchen so fast I almost had an accident, but was barely able to get it to stop by squeezing it back upward with all my might and then strangely I didn’t need to go.
My heart was doing some weird things the other night too, as if it was beating very weakly but I was flooded with adrenaline at the same time.
I now have an appointment with a movement disorder specialist out of state but the doctors in the specialty clinic are highly sought after and so I’m going to have to wait 6 months to get in. They are going to put me on the list in case there’s an earlier cancellation just in case. This guy has written a ton of research papers and is currently funded by NIH to do a study on Kinesiology for atypical movement disorders, so he sounds pretty open-minded.
Home healthcare is about to end its certification period in just a few days (the 29th) and my doctor needs to recertify it soon. I have not heard yet that he’s done it. He needs to have a plan in order for it to be covered and I don’t think he knows exactly how to do that but is supposed to be talking with the Care coordinator about it and how it needs to be written.
I need to get some longer-term services in place like the Independent Care Waiver and an agency that does these kinds of things and more like cooking and grocery shopping, but for the Independent Care Waiver I need to have an evaluation for a better wheelchair so I know what specs to put on the application. Shepherd Center does these evaluations with pressure mapping so that you get things just right for your body. The Hoveround I’m using now is OK for inside the house but I really need one that will recline and has a head and neckrest for when I need to go to the doctor and have to be out a few hours.
So far only one person has contributed to GoFundMe. If you would chip in whatever you can afford I would much appreciate it, and also send your friends and family over to my page. My income is so low I’m not even making ends meet and there are more expenses coming up. In addition to this one trip I’m making in 6 months I most likely will be going to the Mayo Clinic which involves about a 2 week stay and from what I understand you have to stay in a hotel and I don’t think that nor meals are covered.
I’m hoping for some good news about something soon! There are so many barriers to things right now sometimes I start to lose hope for the future.