Myasthenia Gravis
 

Hi everyone,

I'm new to this online posting thing and I really have no idea how this works. i found this site by doing some research on Myasthenia Gravis a neuromuscular/autoimmune disorder that i have. it is kinda rare i guess b/c there are only 3 people in my town that have it and we are all at different stages of the disease. i am wondering if anyone else out there can relate to what I'm going through.
sincerely,
bobcats (my school mascot):grouphug: rule

undiagnosised neuromuscular disease
 

I am just wondering if someone out there has been switched from Mestinon to some other drug to help control their Myasthenia Gravis. I have tried to take it but have had to stop because not only do I have an undiagnosed neuromuscular disease I also have chronic ITP with chronic anemia and the Mestinon gave me ulcers. I am now going through 4 days a month of IVIG infusions, this works for a couple of weeks after I have it but does not seem to last until I get the next dose of it each month. Any information would be grately appreciated. Thank YOU

Hi Char, welcome to this site.
About alternate drugs for Mestinon, read this:
http://neurotalk.psychcentral.com/sh...150#post351150
However, in Europe, there has recently been some shortage of Mythelase due to economic production problems…
Maurice.

Again to Char,
IVIgs and plasmapheresis provide only temporarily relief for MG as they combat or remove the antibodies but they do not attack the primary cause of the desease, i.e. the production of antibodies. That is why they do have to be regularly repeated, each month or so.
For more information about the possible treatments, you may read
http://neurotalk.psychcentral.com/thread246.html
and por the pro and con's for the treatments, specifically the last post (mine...!)
Maurice.

Welcome Bob (catsrule),

You will find lots of folks here at varying degrees of severity with their MG. One thing I have learned here - - there is no knowing what's next with regard to progression of the disease ... or regression for that matter!

It doesn't even start out the same way in folks!! How were you diagnosed (dx'd) and how is MG effecting your life? (For me, antibody neg - borderline failure of SFEMG, a bit of ptosis, generalized arm/leg weakness with any activity, and Mestinon only for treatment.)

Once again, welcome - - it's a great place to learn about MG form the folks who 'live it'.

Sue

Hi Char - and welcome,

I have only taken Mestinon - and am grateful that it has been working well for me. I hope you find the info you're looking for from folks here who have more knowledge than me.

Sue

Well, Bobcatsrule, I'm sorry no one ever responded to your post in January 2008!!! Oy. I hope you will come back! There are a lot of great people here.

Char, Mestinon can increase stomach acid. Have you tried taking an antacid or acid blocker with the Mestinon?

Annie!!!! Good Catch!

I'm so embarrassed! (hehehehe) I didn't even have MG when he wrote!

Sue

MG
 

I am sorry to hear about your having MG. I was taking the same medicine but recently have been told my MG is in remission