Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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In decline

CarlyMichelle
CarlyMichelle
I started taking the Timespan and felt better...for a SHORT while. (about two weeks) This week my eye started acting up badly and I've had episodes with my speech coming out of the blue and more frequently. The MD added more regular Mestinon and that has helped. BUT, for how long?? I feel like I'm sliding down the hill a bit faster right now. It's a bit scary.

To top it off I'm having more head noise (probably from my intracranial hypertension) and migraines.

My new eye issue was one of my iris is floating UP and almost going to back of head. It makes me feel weird even though I'm legally blind in that eye.

I see a neuro-optho who is very good. He wanted me on Tacrolimus months ago and I have been a reluctant patient. I cannot do steroids.
Sigh.

I think the spring heat here is making me flare up worse.
DebSherwin
DebSherwin
I am sorry you are not feeling well and understand the worry you are feeling. I too have the problem of adjusting the mestinon. I have found that a balance between the meds and activity does help but very difficult. Some days are just too challenging, but as long as my breathing is good and I get some energy from rest and mestinon, I try not to worry, but if I get worse, I am in to see my doctor ASAP. Better to be safe than sorry.

Are you able to see your neuro soon to discuss your fears and options? If not, is your GP able to see you?

You are right, heat is not our friend. I may live in Canada, but in the summer it gets up to 90 to 100 during the day. I am not looking forward to that, and am taking precautions already. Hope you are too.

Hope you get some relief and get feeling better soon. Deb.
deleted_user
deleted_user
Is having thymectomy surgery an option for you? I had a thymoma and had to have surgery, and it helped a whole lot with the major symptoms at this point. I'm still on regulating my meds to stay on point, prednisone, mestinon and Time Release along with Imuran, but I believe the surgery helped tremendously.
deleted_user
deleted_user
The thymectomy really helped me and although the prednisone did wonders for other people it didn't do a thing for me. My mestinon has been helping a lot. They bumped up my mg and it has been helping. I have also heard of an MG diet so that might something you might want to look into. Some people have said it worked wonders for them.

And yes the heat makes it worse, the hotter it is the worse your symptoms are. Hope this helped.

-R
deleted_user
deleted_user
I too reached a point where Mestinon no longer worked. My MG symptoms, mainly speech and swallowing, kept getting worse. My neurologist put me on IVIg which again worked for about a year. About a year and a half later I went into Myasthenia crisis. Spent over a month in Stanford University Hospital. I finally got out of the hospital just before Christmas.

My new Stanford neurologist told me she didn't feel treating my MG symptoms was the answer to getting me into remission. She prescribed Cellcept and weekly IVIg. Currently, the severe MG symptoms are gone. All my bulbar functions are normal. I do still suffer from some fatigue, and I have also had two kidney infections. Right it my kidney infection that is my biggest problem.

You might want to talk with your neurologist about Cellcept, which effects your immune system making it less hostel to you nerve receptors in your muscles. It, I believe, is one of the main reasons I'm doing so much better with my MG. I would urge you to talk with your doctor about it.

Best of luck, Bob the terrier