sooo many questions
 

Hi Im new....not new to MG but new to forum. ive had MG since 1990 but ,of course, took awhile to diagnose. It started in my legs then moved up my body. There have been times when Ive done very well taking mestinon just a couple times a day and my symptoms are only noticable to me, but then.... about 2-3 times a year they get really bad. 60-90 mg every 4hrs and 180mg of timespan at night....this can last weeks to months. Ive noticed ,this time, that more mestinon is not really helping....still relying on my cane for balance with weak legs. Is this because its been so many yrs and Im immune to the med? Or have I just been fortunate all these yrs and I should expect to always have trouble?

Welcome to the best place for us MGers.

I was DXed in Feb 1991 so you and I have had this for a long time. I went into remission for many years and only recently started being effected with MG again. I came out of remission after 17 years and I don't know if it's because we were doing so good for awhile that now that it is flaring up it seems worse.

I only take mestinon as well, but am thinking of trying Plasma exchange {if I can find a Dr to do it} The mestinon doesn't work as well for me either.

Talk with your Dr and see if you can get plasma exchange or IVIG but from what I have read about the IVIG you need to start that quickly after being DXed so I don't know if it would work for people like you and me.

Please let us know what your Dr says and feel free to post and ask whatever is on your mind, between us all someone can answer. :)

HI Draggin welcome
 

do you take any other drugs other than mg drugs.
a friend's father had a high colesterol level and was given a statin resulting in weakness in his legs and trembiln in his hands .
They started to look at him for parkinson's before they rea;ised it was the statin giving the problem.

Draggin' and Joanmarie,
Since you've been taking Mestinon for quite a long time and noticed a reduced effectiveness, you coud have a try with your neuro about Mytelase which has the same effect as Mestinon but which could work under these circumstances or when side effects of Mestinon are too severe.
Maurice.

Hey Draggin',

Welcome to the group! You can build up a tolerance to Mestinon, but I don't know if this is the case with you. Some neuros will have their patient stop it for a short period of time and then start it again. Since this is something new for you, the best thing you can do is call and inform your neuro. Please let us know how you make out and glad you joined the group!;)

Hugs,
Pat

thnx all. I'll see Dr on 29th....Ive been here before(exacerbations) just seems like they are worse and lasting much longer. Guess Im just impatient but....well.....you guys know