One of the problems of joining a support group is the feeling you get when instead of people shaking your hand they start backing away and picking up pitchforks. I recently joined a support group for people with Multiple System Atrophy (MSA) which was called Shy-Drager’s support, so I assumed that meant that it was autonomic focused (the translation for non specialists is that MSA appears in three types; the most popular is “parkinsons” or MSAp – popular because there is a treatment for some people with that. The most obscure is almost pure autonomic failure (like heart, circulation, blood pressure, etc) which is still called Shy-Dragers by most specialists).
So I thought this was a hangout for people like me; heart problems, blood pressure problems, muscle decay, pain and heat intolerance. Errrr…first, most people were talking about the MSA in their PARENTS. Okay, not a good sign. I did learn some stuff, like that people with MSA have temperatures under 98.6. I had noticed before that while I used to be 98.8, I was now usually 97.5 about. I have checked it the last three days and every time, in the 97. This also explains times how I have felt I had a fever and it was 99 degrees (which if you are 97 IS a fever) – also a common problem for MSA people.
Before we go way down the road of stuff that is endlessly FACINATING to me and totally “blah blah blah” to people without this condition I'll say I posted looking for people who had similar issues to me regarding heat intolerance (like I don’t sweat) and muscle loss/pain. I also mentioned my age and how long I had symptoms (11 months). That’s when people started to freak out. There was one guy who had some similar heat issues and listed some meds that I will talk to my doctor about but the majority reaction was a sort of gasp (also statements like “you shouldn’t be passing out that much”, “You shouldn’t be that intolerant” - buddy, I DON'T control it!). Indeed it was a reaction so similar to the doctors, EMT’s and specialist reaction that I realized that I really am a scary medical monster. I mean when people with a terminal condition considered horrific look at you as if YOU are their worst medical nightmare, it doesn’t make you feel very happy. I was having a very ugly duckling moment going: “Isn’t there anyone else like me?”
Then the storm came down because I said I use opiates for the pain. By the way, opiates for autonomic neuro pain don’t make you high, they just block the pain signals which are going out. So if there are say, 100 pain signals and you take an 75 strength opiate, then you will get 25 pain signals. But if you take TWO of those pills (150 strength) then you will have no pain AND be very happy. Which is why you work with your doctor. I take pain pills to sleep (because the longer I don’t, the worse the conditions and pain gets) and to clear the pain so I can think.
I have never taken recreational drugs; nope not even one joint of marijuana. Well, it turns out that most people with MSA don’t have pain, or pain like I do, so they were very strongly poo-poo on someone who took them and then suggested maybe THAT was my problem. Yeah. Then one of the moderators came in and said, “Hey, you may have some autonomic disease but you haven’t given enough of your symptoms to prove that you have MSA.”
Well, considering that MSA is confirmed by AUTOPSY, I kinda thought that doing a “Hey, prove to me you really have MSA” on an MSA support group was rather shitty. So I got pissed and I did some research on the different autonomic failure diseases ("Ohh, I'll show him!") but instead got more depressed. To make thing simple, anytime a disease damages something in the brain permanently which controls something which is done autonomicly (without your thought or control), like diabetes, it is a disease of autonomic failure. For example there is the “pure autonomic failure” disease (PAF) which sounds horrible but actually is BETTER than MSA because PAF doesn’t affect the Central Nervous System and so you are fucked up but you get to LIVE.
However there is a disease that is rare and weird called AAN (Autoimmune autonomic neuropathy) which is so rare that there is no count on it (like .5 out of every 100,000 people), and according to the specialist centre of Autonomic Failure Syndromes in Chicago it is so rare that no study has been done on it. Even all medical treatment is listed as “based on anecdotal evidence.” This tells me that people with AAN don’t stay around long (well that and the statement that people with AAN “severe autonomic dysfunction may directly cause death. More often chronic disability increases the patient’ susceptibility to other potentially fatal complications, such as infections” Yeah, well that gives cold and flu season an whole new meaning.
Here are the problems: AAN, unlike MSA doesn’t have a preset of a couple years of symptoms, it can just hit you – BAM! While AAN has all the symptoms of MSA (except certain aspects of parkinson’s that I don’t have), it does have a few very specific markers of it’s own, all of which I have. Guess what’s on there: neural muscular pain and loss of deep tendon reflexes (this would have been when they hit my knee with the little hammer and….nothing moves)! Also, it would match with the secondary auto-immune hypothyroidism I have.
So from my reading today, it seems that AAN people who have my progression are what might be referred to as “a matter of time.” Fuck! Anyway, I am going to call Chicago and see if that is true. And I am taking a list of all the possible medication Chicago recommends for MSA and AAN patients to my GP tomorrow. Am I sick of being sick? YES. But I am more sick of having no control, no idea what is going on and everyone treating me turning to Linda after I say something and going, “that just isn’t possible...” And she just nods her head. Yeah it is.
Okay, an autoimmune disease at the level where it distroys the brain but does NOT show up on an MRI? That's just great. If I have this, it means that part of my little guys who decide to do things aren't doing that and are instead deciding to go all vandal on my Central Nervous System. Thanks guys! Oh, and my defence? They are firing off shotguns inside my brain. Yeah, great idea!
Apparently I did the passing out thing today at a beauty shop, they kept saying to Linda who was sitting off on the side doing work “I dunno, she doesn’t seem to respond.” The manager and the beautician talked to me or over me (I dunno, I wasn’t there!). And then told Linda she better come. She said her first thought was “Oh shit! She’s really bad.” This is because I was very pale and my eyes were rolled back in my head and I wasn’t responding to stimuli. Linda thought, “I better not tell them or they won’t keep working on her.” (ah, so practical!) So she felt my body which was warm, and said, “It’s okay, she’s just very warm, keep going….” And stayed there with me for….I dunno, 20 minutes, 30 minutes? All I can say is if you are going to get hairs plucked, doing it while passed out it the BEST way. Anyway, when I came to there was oxygen on me and after a while Linda put me in the chair and away we went doing the “smile...smile....nothing abnormal here!”
So right now I am looking for something. I really feel like I can’t take it anymore: not an even RARER disease. Treatment based on “anecdotal evidence?” WTF? Actually, it is one of those days so excuse me but....Fuck, fuck, fuck......ah that's better...no...wait....FUCK! FUCK! (insert throwing things here if I had the strength for that) FUUUUUUUUCCCCCCCKKKKKKKKKK! I have a GP and Neuro consult in the next 36 hours so I expect I will be unhappy for a while. Then I am going to DO something. I actually had fantasies of standing up with my swords downtown and just laying into people: disabled terrorist. Of course the fact that I passed out shortly after that fantasy sort of emphasizes my physical frustration. Oh God, why after all these years of prayers can you not grant me the power to make people’s heads explode (and after that....world peace of course).
2 hours ago