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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MaureenNY 01/26/2014

Hi everyone, I have a new symptom. When i say that i make it sound exciting I assure you it is not. Let me know if any of you have experienced this and if there is any source of relief you have found.

*When I am up and moving for a while, my head feels like it weighs a ton. This in its self isn't new but the amount of discomfort is at a new level.

*Finger/hand weakness... After typing a bit, fingers get so fatigued they don't work. Now I don't mean all of them, just enough of them to make me look illiterate.

I know the mestonin is supposed to take care of this stuff and it does for a bit... I am on 4 tabs per day, the time release was totally ineffective. How much mestonin is too much? is the answer just more mestonin. I know in the not so distant future i am going to have to look at other treatments but for now i am mestonin only.

Any ideas on how i can make myself more productive, this neck thing is a super big issue.

deleted_user 01/26/2014

I have a lot of problems with my neck. I have a foam neck brace that I wear to help support my head and neck. If I don't I get horrible headaches. I got mine at the hospital but I'm sure you can buy one anywhere. I'm lucky my hands aren't too involved. I can type with no problems. My only difficulties are opening jars.
I take mestinon every three hours.
Michele

limpnoodle 01/26/2014

I had a terrible time with five hundred pound head and extremely painful neck. When I get super weak, I can't hold my head up at all. Now it us much better, but I still always use some type of neck pillow at all times when sitting or lying down to support the indentation between the back of my head and shoulders.
Mestinon never helped this. It has improved with 3,4 Dap, plasmapheresis and rituxan.

arniebb2 01/26/2014

Hi Maureen,
I am fine during the day but by evening I have over-all fatigue, and am pretty much a couch potato. While sitting on the couch I use a foam travel neck pillow for support. As well, for sleeping, I use a neck roll pillow rather than a standard one.
Good luck!
Claire

SeattleWriter 01/26/2014

I've had a lot of experience with the weak neck and weak hands/fingers. I bought a foam c-collar I wear to work on my computer so I could keep my head under control. I needed to start prednisone in order to get those symptoms mostly under control. I still have a heavy head on bad days. Mestinon alone sounds like it's probably not cutting it for you at this point. You may want to ask your doctor about starting you on some other treatments as well.

mgot 01/26/2014

Yes foam neck brace is helpful. I was able to quit using it when I bought a wing back chair to sit in when I do my typing. I have alternated using a voice to text program with keyboarding. Works if you are able to talk till you get horse and type til it gets hard. Another alternative is a word prediction program to decrease key strokes. There are both word based programs and apps that have word prediction programs. Co-writer for word is one I have used before. On my ipad I have used Typ-O.

mgot 01/26/2014

Oh and my neuro tells me 4 tabs a day and a time span at night is still a low dose and I can go up much more than that. I also take cyclosporine. I take an higher dose when I have a lot of reports to type.Talk to your Dr about your dose but consider adjusting your environment to be more supporting.

MaureenNY 01/27/2014

Thanks everyone! I will try some of your suggestions!!

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