Well, I had referred to Linda about my meeting with Dr. A. as my “meeting with the prison guard” because it felt that this meeting would determine what my future was: more tests or finally some form of treatment. My GP’s office had told me they had tried over and over to get her written notes from the last meeting with me in November, without success. Dr. W., the doctor who treated and diagnosed my grandfather had also tried without success to reach her.
At the reception I was told I could wait and she would see me soon. I said that my GP had been unable to get through to get the last consultation letter and I needed it in order to get my federal disability pension. The receptionist said that Dr. A. would be happy to copy that for me at the end of our meeting and I should just mention it. I told the receptionist to let Dr. A. know that I would be here and as soon as I had a copy of the last meeting’s notes, I would be happy to meet her. As since even my GP didn’t have a copy, I was concerned it would be unprofessional of me to meet with her without that previous meeting documented.
In five minutes I had a copy of the last meeting’s notes (which made my age 27 by the way) and which sadly, got us no further in the PWD status. In the August note meetings (the receptionist came over and drew a line through August on the page and wrote “July” over it saying, “Typo”) Dr. A. gives a survey of my symptoms and the fatigue and how the symptoms worsen with fatigue and that I have “decreased finger function…difficulty picking up pills”. It includes a full paragraph on how exactly I ended up in the wheelchair. She notes that my face is NOT asymmetric (no dropsy) and that while I MAY have an autonomic disorder, she expects an improvement in 6-12 months and “At the end of the day I do not expect to find any progressive disorder.” She brings up the possibility of Conversion Disorder (hysterically illness).
At the November meeting, I presented the central autonomic function failures, like the Holters and other tests which showed that central autonomic failure was occurring (things that cannot be controlled by Conversion Disorder – like your blood pressure fluctuating, or waking up in neuro pain every few hours). She notes in the November meeting that in complete opposition to the July meeting that I have the indications of postural hypo-tension (which she says in the July report that I did not have). Indeed, in the meeting she said repeatedly, “Yes, it would appear you have a form of autonomic failure, but I believe that to be POTS.” This is what my GP has been working on. In this letter however, she says that she will continue to “pursue the possibility of autonomic failure” while in July she told me she was getting an MRI done though there was “no possibility of anything on it.” In the meeting in November she indicated there was an abnormality on the IMAGE so the MRI had to be repeated.
The letter however says that the T1-T4 spinal section of the MRI is showing an abnormality in my SPINE at the upper thoracic cord, which is a sign of anything from a Motor Neuron Disease to tumors. She agrees to the nerve conduction test but told me during that meeting and the July meeting after some tests that “You have a completely intact neural system.” And in her letter says she will refer me to the Neuropsychiatry Unit at UBC. My GP has never seen this letter.
Indeed, because of the head game played by Dr. A, I have asked my GP repeatedly “Do you think that in ANY way I could be consciously or unconsciously producing this?” He has strongly and emphatically repeated “No.” And indeed, with his weekly notation and observations of my symptoms as well as his, frankly, better medical skills (for example, he COUNTS my systolic and diastolic heartbeat by listening, while Dr. A stares at the meter on the wall; he COUNTS and FEELS for my erratics, while Dr. A. has no interest in them), he, like me, simply cannot understand how she could hold on to POTS as a viable autonomic failure theory.
So, Linda and I went in today and turned on the recorder. I told Dr. A. simply that her letter of November not only goes against what she said to my face (that this is a permanent disorder) but gives me no possibility of getting my PWD status and that the doctor section is filled out, only her letter remains. I said that her previous letter indicated I would be getting better by now, is that what she believes? She said she would write a strongly worded letter for the Federal Government. Then we turn to autonomic failure. In the meeting at one point she says emphatically when I express my own tests to eliminate POTS, “I do believe that you have POTS.” I point out that this is an autonomic failure and how does this match with the autonomic failure of my heart, lungs, and blood pressure? She backs away saying that “This is a case where the evidence simply doesn’t match up.” She says that though I have 6 relatives dead of MND, that I have no evidence of an MND. She says that I do not present autonomic failure as her Parkinson’s patients (in their 60’s and 70’s) present. I ask about the nerve conduction test and how could 1 hour of testing produce only a few words. She said that there is more, but it is not for the tech to interpret. I ask her to then interpret. She goes on at high speed using only specialized neurological language, I repeat back my understanding of what she has said in lay speak to confirm (luckily I know most of the specialized neurological language). It says of the three limbs tested, all three showed significant abnormalities, the right arm and the right leg show both a “Significant” delay as well as a loss of signal PLUS in the arm, a loss of response signal back. The left leg has a delay and loss as well. This means that when my hand goes into a claw or fist or when I wake paralyzed, that the signals to make my body move are not getting through; or rather, everything I had previously told her was happening to me on my right side of my body. And that I was dropping pills and forks and all things with my hand because the signals of pressure and movement were not going TO the brain either. Again, now we have concrete evidence of what I had described in detail in my first visit (but was dismissed due to my "intact neural network" according to Dr. A).
I put to her that in combination with the tests she did in July/August, and what she said, that is this not a degenerative disease? “I cannot see you having a degenerative disease.” She said before asking what she said in July/August.
“That I had a perfectly intact and functional neural network.”
She says that the conduction test does not have to mean that, it could simply be demylanization of my nerve endings, or the destruction of ALL the rapid twitch fibers in my limbs. What could cause this so quickly? She did not know and got quite aggressive saying that she COULD test for rare and unusual things and that there might be a very simple explanation but she doesn’t have the time to test for various obscure membranes which could cause this. I ask that maybe she should get a nerve extracted to check if it is demylanated? She says they will do that in Vancouver as she has referred me to four centers there: The Movement Disorder Center (MSA and Parkinsons) with Dr. S. (who my GP VERY much wants me to see), the Neuro-genetics center, the Neuro Motor Disease Center. She also tells me she has contacted the “UBC unit” which would take me in as an in-patient and do all sorts of medical tests like MRI’s and I would be seen every day by doctors.
“Well how long would that be?”
“Several months is a standard minimum.”
“A couple months?!”
“Several! But they look at everything, experts on dealing with symptoms and conditions that are outside the box.” Says doctor A.
Linda tells her about the TIA and the evaluation the hospital worker did. Dr. A says that she can clearly see the asymmetrical aspect of my face and that my right side of the face is dropping and only the left side of the lips are moving.
“They are?” I ask in surprise (I know it was past my afternoon nap but didn’t think it was that bad yet).
She then proceeds to say that “Many young people, quite healthy have asymmetrical dropsy in the face.”
What? (Note this contradicts her first assessment of my face six months ago).
I bring up the heart as clear evidence of autonomic failure. She assures me that many people have heart rates of 240 beats per minute. I tell her that yes, it is called Sinus Tach and they go to the hospital, they don’t have that as a resting heart rate and that because of my holters for my heart due to Marfans, I have a record of what my resting AND sleeping heart rate were and maximum and for example, my sleeping heart rate increased in two months by 1/3. “Completely normal.” She says.
I can’t decide if I am in some sort of BBC skit or she is completely disinterested and decide on the latter. She starts to hint that maybe there was “some error in the conduction test that day.” She is literally intent on dismissing ALL evidence recorded or otherwise because she cannot “know” immediately what it is and this is, after all, her life’s work. She gives me the SAME tests as she did in July, only this time the reactions are minimal, I mean she is whacking away at the part of the knee which is supposed to twitch and nothing is happening. She sees my hands are eggplant and I mention my GP said it is Reynaud’s. “Yes, classic Reynaud’s” she says and continues with the test after feeling my toes and fingers to confirm her diagnosis. I point out this is a condition associated with autonomic failure. I do the hand reflex test and the hand to nose test and some cerebral test which requires me to move my leg. Anyway, Linda says it is obvious there is something VERY wrong with the way I am moving and Dr. A. says, “Yes, I know you will pay for this later.” But at the end says, “Besides diminished neural responses nothing significant.”
“So this has DEGENERATED since you did it six months ago?”
“No,” she retorts, “I think WHEN the precise reason is found out that it will be stopped or indeed reversed to some extent.” Then starts getting angry at me because “All my other MSA patients (those with Parkinson’s and 30 years older than I), except one, who is bedridden, do not use a wheelchair, why do you use a wheelchair!” I explain it all over again and she says, “There is no way you could be running out of oxygen for one, look at your age, you should have loads of reserves.” I mention that when Vital Air tested me they had me stand and my oxygen went to 87 right away. “That must be the decline.” Dr. A. mutters.
Linda says, “That test was done a year ago.”
Dr. A. loses interest and I ask about the autonomic failure. She says, no, I don’t have autonomic failure, or probably not, or not like any she has seen. I say, “But the Reynauds?”
“I didn’t have a proper examination, it probably just LOOKED like Reynauds.”
This is becoming increasingly surreal so I ask for three final questions. 1) It has been 14 months, how much longer does she intend to continue seeking diagnostic tests?
Well, with the four clinics she thinks about two more years. I tell her I am going to Japan in April and will be away. She asks why, and I say that looking at the progress over the last year, I don’t know if I will have the strength to go out for more than a few hours after this next year for certain. She made a non-committal statement about how people should take vacations when they can. I said, “I passed out from heat exhaustion in Triumph in January, you REALLY don’t see that as a heat intolerance progression/degeneration?” She grimaced.
My second question was, “When are you going to start treating me?” This produces the second most forceful statement of the meeting, “I can’t treat you, there IS NO treatment for autonomic failure.” Wait, what happened to not having autonomic failure?
I point out that she could treat the SYMPTOMS and she gives me a neuropainkiller. I can’t read the script because my eyes are going but I asked where I go to get a refill, her or my GP. She says I won’t need a refill, Linda says she has stepped me up to the maximum dose in five weeks and written 9 months of refills. Yikes!
I ask if she got the call about my genetic info from Dr. W (who has tried several times to talk to her and Dr. A. has never returned her calls). Dr. A. says she never heard from Dr. W.
So I go to the third question which is when can I get the letter for the Federal because I have been working for four months to get this submitted and her letter is the last thing I need. Two weeks she thinks. I tell her I need it though I am not expecting much income which is why I am searching for a job through Triumph. This produces the most extreme and rapid response of the meeting as she whips in front of me and almost screams, “You CAN’T work, you can not hold a job! Do you understand, you are in no condition to work! You need to stay home and conserve yourself for the testing.”
Okay, I don’t have autonomic dysfunction, or a MND and she has given up and is handing it over to Vancouver but both my central autonomic and my peripheral neuropathy are failing. But of course, I am making this illness up (subconsciously), except she is shrieking that I am far too ill to even think about part time work. Hmmmmm.
I get home and look up this UBC center. It is a psych ward; indeed to get in you need a psychiatric and a neuro psych workup. I can’t remember this being done. It deals with patients with significant brain injuries, advanced parkinson’s patients. “In Patients” are: We provide treatment for adults who are acutely ill and frequently psychotic. AHHH? Several Months? There is an attached form where you, while inside are evaluated on “how well you respond to goal oriented tasks” (with minimal prodding, frequent or severe prodding”, there is even a line about your sexual activities). I can’t wait until my GP finds out that while he thinks Dr. A. has been fast tracking me for Autonomic and Movement Disorder Clinic, she is fast tracking me for this instead.
Needless to say, the idea of being physically helpless and often paralyzed in a locked ward where every student, nurse, administrator has evaluative control over my health care (are they even capable of sustaining it?)…..Yes, I had the heavy breathing and a bit of a panic attack. Linda and I asked, “Why, after all Dr. A said, would she want me here?” We decide it is NOT that she thinks I am making it up as every test from the MRI to the nerve conduction has shown her prediction wrong and that there IS a genuine neurological condition. But rather, that once in this place, they test you and test you and don’t let you out until you have “appropriate care in the community” meaning: She has given up, she won’t admit she is wrong as I am not a ‘typical’ MSA case (as at one point she yelled, “You are NOT what I see as MSA cases!” and “Specialist Dr. T. said you were MSA, not me!” But then, if she only considers Parkinson’s cases, she is missing two of the other MSA types. Or as I said, “My heart is autonomically failing as is my BP, and even if it is Pure Autonomic Failure, which has been recorded since 1925, no one STILL knows why many PAF patients turn into MSA patients").
So, no, she doesn’t think I am psychotic, she just doesn’t know what to do and she can’t say she is wrong so she will dump the problem on another facility, one which locks you up until they figure it out, and I guess, if they can’t, I stay locked up forever?
I see two paths before me. In one, I focus on my standard of living and making the most of the time I have, I work with my GP and any specialists who will work to improve my quality of life, for however long that is. In the second, I see myself before the years end, hospitalized (not in the neuropsychology center – I can’t wait to hear the things my GP has to say about that) because of the unrelenting demands of specialist who openly and vehemently acknowledge I am too ill to work even part time. Yet, the diagnostic tests, even in the hospital go on because while the specialist have nothing to offer but years of tests for diagnostic reasons they openly admit, they have no treatment other than painkillers.
14 months-15 months is enough: It is time to work more with the caregivers and other support or hospice care and leave my GP to field the specialists. I seriously believe that some specialists (Dr. A and her friends) will literally continue tests beyond death; so clinically obsessed are they with their “inch” that they have forgot I exist for reasons beyond their scientific curiosity.
8 hours ago