Hi Moshe,
Hope this helps.
Robin
Questions:
1. How old are you ?
46
2. Do you have a confirm diagnose of MG ?
Yes
3. How did you got your diagnose ?
I was first dx with symptoms/EMG/Trial of Mestinon. It was reconfirmed with
SFEMG at a major teaching hospital with neuromuscularspecialists.
4. How long do you think you had MG before you got your diagnose ?
At least 7 years. I have MS so I attributed all the weakness to that. I finally
went back to the neuro when my arms got really weak. Hedecided to retest me
because I had done so well over the previous 7 years that he was questioning the
MS dx. When he was doing theEMG, I gave him the example of trying to stir cookie
batter. After a few strokes, it becomes a monumental job. He said, "I doubt if
youhave anything serious like Myasthenia." He did another test and then said,
"Wow, I've never seen it go that low!" He was referring tothe monitor for the
EMG and then said, "You must have severe Myasthenia Gravis." I decided to go to
the teaching hospital because
I didn't think he was treating me the right way (judging by how others were
being treated on the MG list). I wanted to be on Cellceptinstead of Prednisone
and he would not even consider Plasmapheresis. It is also very unusual to have
MS and MG.
5. Did you hear from some doctors that you don't have MG ?
Not any that mattered. I was very lucky to have doctors who are specialists in
MG. I had a Neurosurgeon (back problems) who I hadspent a total of 15 minutes
with him tell me that I shouldn't just take any doctors dx. I told him it was U
of M (Univ. of MI)
neuromuscular specialists who confirmed it and I totally trust them. He
questioned the MS too, but that one I understand since I have apretty mild case.
6. What MG symptoms do you have ?
Weakness, mostly upper body - Arms, Neck. Overall feeling of weakness. Diaphragm
weakness - especially when Mestinon is low or overdoing it. Interestingly, I
have very little ptosis. Foot drop could be MG, MS or back problems.
7. What drugs/treatments did you try that didn't helped you ?
Thymectomy
8. What drugs/treatments do you take that helps you ?
Mestinon, Plasmapheresis, IVIG, Cellcept, Prednisone (I hate prednisone). Right
now I am on Mestinon, Cellcept and doing IVIG every 4 weeks. I think
Plasmapheresis works better, but my doctor said that she thought it was harder
on my body. They found out I was anemic at one point and a hematologist tested
my IGs and found out I
was low in all of them. He thought it was the plasmapheresis, but when it didn't
come back up much after not having a treatment for 6 months, he decided it was
probably Common Variable Immune Deficiency (CVID). Basically, it makes you more
prone to
autoimmune disease so that was another piece of the puzzle. I am not severely
low in IGs so he is not treating it, but if he did, he said he would have put me
on IVIG treatments. I am already getting that for for the MG so I am treating
both problems at once.
9. Do you think some times that perhaps you don't have MG, but
something else ?
I used to, but I am sure of it now. I used to do that with the MS too. When you
feel good, it is easy to think that you don't have it, but then it comes on
strong and squashes that thought. It gets very hard for me and my doctors to pin
point the problem since some of my dx have symptoms that overlap. Fatigue is a
big one.
10. Are you confidence that you have MG but they didn't yet found the
correct antibodys in your body ?
I wasn't surprised that I was sero-neg for MUSK too. I seem to defy
the odds in most cases. It seems normal for me now.
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http://myasthenia.puhs.org/
Wednesday, August 09, 2006