I get it a lot isnt understood about nmj but has it been determined that living with MG without treatment (undiagnosed) for many years causes damage that cannot be repaired? If yes is damage due to "pushing through" symptoms and doing ore than should or due to lack of medication to assist or both?

I was told that mestinon only helps when you are taking it. If that is true, it doesn't seem like it would make a long term difference one way or the other whether you take it. My neurologist gave me the impression that it just helps me get through the day (and life in general).

I am interested to hear what others have to say on this for sure.

I ran out of my 180mg time release Mestinon about 2 weeks ago and missed 4 days of it and saw no difference. When that happened I just stopped taking it and it has been 2 weeks with no changes good or bad.
Mike

Mike

You are also taking other med's too right? If my recollection is correct, you didn't get much relief from mestinon as compared to someone like me who has noticeable relief when I take mestinon.

Stephanie

It's weird this post came up today.

I took my first mestinon, prednisone and cellcept in two days just 1/2 hr. ago. Just before signing in here. Friday and Saturday I did not take any medication.

I did not feel any difference with the exception that I got a couple of nights of pretty good sleep and no headache. I was afraid to go any longer without my meds.

I have an appointment in November with another Neuro for another opinion on whether there may be some other treatment option for me. Specifically Cytoxin.

scrubbs

Scrubbs
I would be VERY careful with the prednisone. I missed a dose and it really knocked me for a loop. My dr is slowly reducing mine. I'm down to 20mg.

I feel the same way. Mestinon has no effect on me and I have tried Imuran which only made me sick as a dog. I am currently on Cellcept with no effect for 7 months. I have had so many IVIG's I have lost count with zero effect. I'm like you, I need to look at another approach. I'm considering going to Wake Forest for a second opinion. I would never ditch my Neuro I love him. He suggested Wake Forest a few months ago. I do have positive Striational antibodies plus 3 others which I have been told is the most severe form of MG.
Mike

The answer to your first question-No, there is no clear data which show that.

I believe (from the limited data there is) that it is more likely that the severity of the illness is determined by its nature to begin with. So, some patients will have a relatively mild illness which will never progress, whereas others will have a more progressive course. It is not clear if response or lack of response to treatment is also predetermined.

As to your second question, I think that it can cause damage.
In fact even trained and healthy athletes have some damage when they exceed their abilities. Trained marathon runners do not run faster than what they can with 70% of their VO2 max.

Mike;

Prednisone seems to be my bread and butter too.

scrubbs

Oh, and it's my Neuro sending me for another opinion.

scrubbs

See I believe Neuros send us for second opinions because they do not have the expertise to deal with difficult cases. That being said I appreciate my Neuro doing that. That's just one reason I like him. Most of them have ego's that will not allow that. I have already been for one second opinion and he was the one who found out I was positive for 4 antibodies but did not offer any plan of attack.

Prednisone almost ruined me. I was on 60mg and the muscles in my legs got so weak I almost needed a wheelchair. The second opinion doctor (neuro-muscular) said I was one of those people that can't take Prednisone and started tapering me that day.
Mike