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Old 02-22-2009, 12:19 PM #8
ras1256 ras1256 is offline
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Join Date: Feb 2009
Location: outside Denver, Colorado
Posts: 366
15 yr Member
ras1256 ras1256 is offline
Member
 
Join Date: Feb 2009
Location: outside Denver, Colorado
Posts: 366
15 yr Member
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Hi Erin.
I have been on a real roller coaster with Myasthenia - first prelimary dx in 1996 then that was removed (had an idiot Neuro at the time.) and later dx'd as spinal cord compression form a 1991 car accident and 1993 discectomy. Looking back I think it was both, cuz I did get better after another discectomy, but never to my old self again. Then in 2003 had a problem that they thought was spinal cord again, but it resolved by end of year.
MG reared it's head in April of 2004 and my neuro surgeon slammed me in the hospital when my husband had to carry me in to her office. She called in a hot-shot Neuro diagnostician because when she mentioned MG ( I was weaker that in 2003, but less spinal cord signal than then) who dx'd me and said it was "absolutely, for sure, for sure" this time. Had IVIG which didn't seem to do much then, put on Pred. then Imuran (in addition to the Mestinon) to get my strength up, then the thymectomy, rest, more drugs, blah blah blah - you know the drill - but SLOWLY over the next fews years had gained back most of my old self as long as I didn't push too hard for too long. I was off all meds from 5/08 until something triggered me after this "coil" for the aneurysm, which they can't figure out why it would pull me out of remission - I had a neuro anethesiologist and
neuro vascular surgeon that were in close contact with my neuro and didn't use any of the drugs on the no-no list, but still.....I'm struggling again. I haven't gotten to crises stage yet, but have been pretty well stuck on my recliner until my Neuro tried a 5 day round of steriod as kind of a test. As they decline, my strength and stamina are going to.
I think he's pretty good - my fav neuro stopped taking my ins. so I had to find another. I'm encouraged that even though he (like others have) questions my diagnosis, he did give me something more that Mestinon to help me feel better and confirm my dx to him.
I'm just tired of all the yes-no-yes-no I get because I don't present "right".
Personal info. - I live in Denver CO, just turned 52 in December, have been married 32 years to the most awesome, supportive man in the world and have 2 children - girl of 31 and a son of 30, granddaughter that is almost 10, in-laws and mother that are all very emotionally supportive. I just wish they didn't all worry so much - I'm too stubborn to die from this.
The aneurysm was found incidentally when they were checking for another reason for my occasional head swimming and imbalance, so it really didn't scare me much. I believe in fate, and it seemed good that they found this before it caused problems which, given the artery it was on in my brain, the location in a bend of the artery and the shape of the aneurysm it probably would have burst at some point which would have been death or worse. I (nor they for that matter) just never anticipated the relatively non-invasive procedure could do this to me given the precautions they took.

Anyway - about your PICC - I doubt it would be good to leave it in. Did they offer that option to you? For how long? I have awful veins for IV's etc. so I'd never be able to do that, but I would definately discuss that with your docs. Especially given the problems with infections you're having. RE: your thrush - I've been fortunate not to have any problems with it - but so sorry you're having to deal with it. I sure hope your thymectomy gives you the same result I had. It was awsome to be able to get my life back again after such a long haul - and I look forward to getting myself back to that point AGAIN only much faster this time I hope. Keep up the faith and positive thoughts - they make all the difference in the world. I know what you mean about MG scaring you though - when I am in my weak state is the only time I ever feel "mortal"!

Incidentally - there is a website with a free book written by a Myasthenic who was diagnosed 50 years ago and has analyzed so much about the disease from a true layman's standpoint that I just found and think every myasthenic should check out.
It really struck some familiar chords with me!
Take care of you.
Becky

Last edited by Jomar; 02-22-2009 at 12:27 PM. Reason: link reference removed per guidelines
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