I could tell you the long 2 hour+ version or I could make it short. So here it goes: we were sucker punched.
The building was warm and my reynauds was up to my biceps and my fingertips were bright blue, and the receptionist helped get cloths to cover me with cold water. Then the techs started the nerve conduction test. This was the “test” which would tell them what tests they needed to do, or so we were told. And not only was the Tech there but also a junior neurologist (med school specializations?). It became quickly apparent that they were NOT doing a random test with phrases of “What leg and arm did they find the most in?” ‘Okay, do it there; no, that spike is too much, try over a little left.” Then after doing the tests they were “unhappy” and decided that my results were due to “being cold” (I had told them about the Reynaud’s coming in – Linda was saying, “she’s not cold, she’s HOT!) Anyway they went to warm up gel packs to bring my hand and foot to full heat (even if that isn’t how it is on a day to day basis).
This is when it became quite clear, during an argument, where one claimed that the result was “normal” and “we got what we want” and the other person was, “No, look at the height, that is not normal.” Countered by, “Heat it some more and we’ll try again.” That the techs were there not to do an impartial test but that they HAD my previous test, the one which said I had peripheral neuropathy, and the one where I asked Dr. Atwell-Pope: “So when you said I had a perfectly intact neural system three months ago, would you call this a degeneration?” She had said maybe the machine which took the test was off. Well, it seems that opinion along with ALL of her opinions had been passed on and these two techs were trying, pretty desperately to come up with a “normal” reading (Tech 1: “49, that’s normal.” Tech 2: “No, it should be 60 minimum!” Tech 1: “I’m doing it again.”)
Finally Dr. M. (now please do NOT confuse this Dr. M as the same as Dr. Mezei who was the same Neurologist who had Dr. Atwell-Pope “train under me” Me: “Is that where she started to diagnose “conversion disorder”?” Dr. Mezei: “(YES!) She ALSO did work closely with Dr. Hurwitz of the Neuropsychiatry unit; I believe she’s referred you there too.” – this COULD be a completely different Dr. M who is a neurologist who Dr. Atwell-Pope referred me to at UBC, though she (or rather Atwell-Pope used the same exact diagnostic verbal exam)), came in, looked at the machine reading and told the techs to give it up. She later admitted that I have “moderate to severe peripheral neuropathy.” And is that better or worse than the last time the nerve conduction was done? “Oh you can’t compare labs.” She said. Odd, since it seemed that your techs and the neurologist under your instruction where pretty much holding up the results to their screen and comparing pretty damn hard.
Well, we go through the symptoms starting from which bothers me most; no sweating/heat intolerance and had to describe the whole thing from fainting, arms green, bowel cramps, passing out, spasming of all limbs etc. Just thought I should pass on to Cheryl, Maggie, the Jubilee Hospital and two other EMT crews that….I seem to feel I get heat exhaustion, but this has not yet been proven.
At various parts I would hold up my now purple hand and blue fingertips and say, “Has anyone here heard of Perfusion? Or Oxygen” I did the tests, and had some problems speaking because as I said, putting electricity though me makes me go “funny” (since they did all the tests twice and some three times, just to try and get a better result – a SORT of thorough exam). Then to the heart. I was obviously wrong about it getting rapid heartbeats, even more so when I stand. Why wasn’t I out walking every day again? And why do I use the wheelchair? Then we did the absurd, “Stand on one leg!”, “Stand on the toes”, “Stand on your heels” “and now HOP!”
I need to let you in on a secret, I am actually quite competitive (indeed I tried to explain epee to the techs who were trying to say I had lost 10% of nerve speed sometime EARLIER in life and not noticed; and how in Epee, if I lost 10% of my reaction time when you are going across 6 feet and making binds and hits in a quarter of a second, not only would I know, EVERYONE on the circuit would know it!). And the fact that I had “failed” these tests at Dr. Atwell-Pope’s office bothered me a great deal. So when it came to hops I used my entire body to crouch from the waist and use the vertical force of thrusting the torso upward to launch myself…..well, vertically, knocking out two trays and leaving me SMACK on the floor.
“You can get up now.” Dr. M said without missing a beat (Linda wasn’t loving her at that point).
So this is the conclusion: Dr. M says that the tests show that I have Peripheral Neurological failure of the axons as well as a bit of the mylar. I have autonomic failure BUT sometimes SOME autonomic failure CAN be Peripheral and not Central, and that in my case MAYBE the peripheral neurology MIGHT be caused by an autoimmune disease that no doctor can determine but if they CAN then MAYBE it will be treatable. No offence doctor, but when they say, “When you hear hoofbeats, look for horses not zebras” you seem to have heard, “Listen for a herd of Zebras” Oh yeah, I forget the kicker, she ALSO believes that some of my symptoms are not consistent to her findings and that CONVERSION DISORDER is at play. Conversion disorder means that it is in your head, in her case she thinks it is STRESS (that would be because my original GP diagnosed me with PTSD, and then later diagnosed my FATHER with completely different symptoms with…PTSD and sent him to the SAME neurologist – Dr. Atwell-Pope – what is the chance she might find HE has conversion disorder).
I asked her straight out: “Is it not true that MS was considered conversion disorder, that RA (a type of arthritis) was considered conversion disorder, that CFS/ME was conversion disorder and that FM is sometimes still considered conversion disorder.”
“Yes,” she admitted, “but the neuropsyh unit really left no stone unturned these days.”
Oh, I told her, once they get you in a locked ward, I really believed it. But essentially the history of “conversion disorder” was the presentation of diseases, diseases that CAN be identified today, being classified as a result of being a problem in the person’s mind?”
I let that go. We did some dancing, like, a) Can you treat me? Well, no. But my suggestion of IVIG merited looking into in 6 or 8 months once the tilt table test had PROVEN autonomic failure. I pointed out that Dr. T’s chart proved I had orthostatic hypotension, that in fact six or seven doctors had proven that, the ONLY doctor who still “Wasn’t sure” was Atwell-pope (her prodigy!).
Could she make me sweat again?
Could she stop the Seizures or TIA’s?
I pointed to my feet which were at this point deep purple, “Do you believe that this is autonomic failure?”
Can you help the irregular beats and pain of my heart?
But she wanted to “alleviate my quality of life” by concentrating on dealing with the conversion disorder. Linda and I wanted to know….what was there left to treat?
We tried guessing, “Balance? The ability to hop on my heels?”
She said she would instruct Atwell Pope to see me in the Autumn. I said, “that’s after the summer.”
“How am I supposed to live through the summer?”
Dr. M: “Oh, you will live though the summer.”
“What will you bet on that? I’m betting my life, will you bet your medical degree?”
Dr. M: “Um, I’ll bet my word.” (My life against her WORD?)
I continued on, “Dr. Atwell-Pope would not even concede that I had degenerated and indeed PROMISED me (her word) that I had a completely intact Neurological system”
Dr. M: “Well, based on the tests (pricking with a pin, banging with hammer, etc), I would have said you had an intact system as well if I didn’t see the conduction results.”
Again, I asked, “So I know what proof I have for TIA’s, and what for autonomic failure, and what for peripheral neurological failure, but what PROOF is there of the Conversion disorder again?”
Dr. M: “Any neurologist in that room could see it.” Well since you are the only neurologist in the room, and the same one who WOULD have said I had a perfect neural system…..Linda and I wondered how MANY of her patients who get referred with stress end up with “conversion disorder.”
We also realized that Dr. M was discounting the heart, the blood pressure variation, the vascular constriction and the other central nervous system aspects to fit her theory because she said, after she had outlined her “maybe it is just all peripheral and autoimmune theory” and finished with “and thus NOT MSA.” Ah, so Dr. M thinks that this is pretty much my only shot at NOT having MSA? That what, the central nervous system decline doesn’t exist and it is done by the peripheral nervous system.
So I said, “Dr. M, it is going to take two years to try and prove that this is Peripheral instead of Peripheral AND CENTRAL, and then you have to prove it is an autoimmune, and you have to find WHAT autoimmune it is; which after a LOT of testing you don’t seem to know but you believe that is your best bet, to find this obscure autoimmune disease that no one else has figured out on the HOPES that it has a treatment that can reverse this. And after I have done all this, if ANY aspect of that is wrong, then, according to MSA, after leaving your testing I might have a year to live?”
“Well, I’d like to think the other would be true.” Fuck Dr. M, you are playing with my life. And what are you willing to lose….your WORD? Now I understand why CFS patients killed themselves and willed their body for autopsy.
She went through her two scenerios again: The whole peripheral and autoimmune with some conversion OR peripheral and central with some conversion and wanted me to know that she was all ready to put me in that locked ward to deal with the Conversion disorder. I pointed out that the Neuropsych unit did not hold the life support system I needed.
She looked confused.
“Do they like a LOT of highly pressurized oxygen left about on that unit? Do they like a private fridge for ice and cold packs? Do they like oxygen converters? Do they have treatment for an “R” Seizure (the type the hospital said I had between a seizure and a stroke).”
“Uhhhh you would need to take that up with the unit.”
“And what is the success rate on that unit?”
She looked uncomfortable and said, “Dicey.”
Now this is just me but if I have someone who is looking at a) death or b) focusing on conversion disorder to improve quality of life with MAYBE death and they asked me the success rate, I would say, “80% or better” if it WAS 80%. If it was 50% I would say, “Right now 50% but that means your life could dramatically improve in a 50/50 chance!” So what is “Dicey?”
And no offence but when autonomic failure is on the table; when autonomic failure is confirmed by the neurologist (she just HOPES it isn’t BOTH central and peripheral), then who CARES if my balance is not what you hope it could be, or whether I can hop on my toes. My feet are purple, one arm is green and the other is Reynaud’s up to the bicep. We spent several hundred dollars and I will spend several days in recovery to find out:
1) After trying to prove as hard as they could otherwise: my peripheral nervous system is moderately to severally damaged and may be dying (not news to any careworkers, people who know me or visit).
2) I have autonomic failure of at least the peripheral nervous system, the experts at the hospital in Victoria believe that it is the central autonomic failure which will kill me. Dr. M doesn’t know what condition could cause solely a peripheral nervous system to look like Multiple system Atrophy but is convinced one exists.
3) After checking a total of ONE muscle, Dr. M believes that I do not have a wasting of my muscles aka a motor neuron disease. (Linda noted that due to the body tensing stiff as a board – because I have a NEEDLE sticking out of me, they couldn’t actually heard or read the muscle, only the static – so she doesn’t know HOW exactly they made any observations on that ONE muscle, much less a determination regarding Motor-Neuron Diseases.)
4) She thinks I should try an antidepressant (She didn’t recognize the name of the UK one I take).
5) Linda and I believe that anyone referred by Atwell-Pope will come to the same conclusion because a) she learned how to diagnose FROM them and b) she has sent them a letter telling them exactly what to see. So we are going to get a second opinion, even if it means going to the states and paying for it.
6) Dr. Atwell-Pope’s “You’ll live 25-40 years” has turned to “I’m sure you’ll live five years.” To Dr. M.’s, “I have to believe you will live three years” and “I’m betting my WORD you will survive the summer” (not with her help, thanks!). So however you look at it, there is some major hedge betting going on.
7) And we feel like shit, we hate doctors, we hate doctors who torture us and then tell us it is all our fault, or that it isn’t our fault but that they aren’t going to DO anything for months to years, when we may only have months or a year. Linda felt cheated out of her “impartial” second opinion. And we are angry. And you know what happens when I get angry….I get a seizure! No, I mean I get a complaint filed and THEN I get a seizure or TIA.
8) Finally, it isn’t as funny as it would seem when you are asked in all seriousness during a neuro exam “So are your parents related? Like perhaps cousins or …..” (as in, did INCEST and inbreeding do this to you?).
25 minutes ago