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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Waiting on diagnosis...HELP!

MiaG
MiaG

My neurologist says he's pretty sure I have MG based on my symptoms, but he won't prescribe anything to aleviate my symptoms until he confirms the diagnosis...which I'm ok with.  BUT here's the thing... The results for the AChR test just came back negative (after 3 long weeks of waiting), and now he wants me to go get a MuSK test, and see me in 4 weeks to give it time to get the results.  


So, here I am suffering for another MONTH with no relief (insert sad face here).  I have a droopy eyelid, difficulty chewing due to exhaustion on my jaw, NO difficulty swallowing or talking though, but it's difficult to smile because my face feels heavy (it's kinda hard to explain), I can't brush my teeth, or my hair, or do my make up correctly because I can't keep my arms up for long and I must take breaks...which makes it difficult to get ready in the morning.  Shortness of breath (although it might be because I'm anxious to finally get a diagnosis), and my head feels like it weighs 100 pounds and my neck can't keep it up (this feeling comes and goes suddenly) and it produces neck and shoulder pain.  


MY QUESTION for someone that can help me...what can I do at home, or over the counter to make my symptoms better while I wait for a diagnosis (which can take several weeks based on how long the labs are taking)?? I need to do something so I can keep my sanity...I still have to work, and take care of kids, and do stuff around the house, but this makes it so hard to do all my normal activities.  


PLEASE HELP!

Summerlover
Summerlover
Hang in there. I have yet to get diagnosed. Both acetocholene and musk negative. Regular emg negative. I have difficulty with stairs, extreme difficulty swallowing. I feel so heavy as you. I am being sent to Boston to see a neuro muscular neurologist. I have been like this since January, and have my appointment end of July. I hope things go well for you, hopefully you will be musk positive, and they can get you started with treatment. It sure is frustrating.
grecogirl
grecogirl
I suffered for 4 months before finally he decided, after a second EMG I had hints of MG. He put me on Mestinon and wanted me to get another test. The Mestinon helped, but I couldn't get the other test because of insurance reasons and I think it was the Musk test. He decided to go with Plan B and put me on Prednisone which helped immediately. I was very weak all over, couldn't even tie my shoes. I took the Prednisone with the Mestinon and then tapered as I went along. I tried to go off the Pred after about 5 months, but had a terrible flare of double vision that lasted a month. I had to wear an eye patch and upped the Pred to almost 40 mg a day. I am now down to 5 mg a day with an occasional Mestinon, no more than 2 a day though. This has been for over a little bit of a year. It is ridiculous that it takes so long and you have to take all these tests and then wait some more. I only hope I can stay on a low dose of Prednisone. I was down to 2.5 mg before I stopped it and was doing fine, but I am kind of afraid to try that now. Maybe in a month or so. I just went down to 5 mg about a month ago. It is sort of a trial with everything. Hopefully soon you will be put on some medication and feel better.
MiaG
MiaG
Summerlover, Grecogirl, thank you for the words of encouragement. It's difficult to go day by day, but I always say I have a strong body (and a strong will), BUT not knowing if this is really MG is killing me. I want to get a proper diagnosis, because if it's not MG, then I don't know what it could be...and all those tests and time and money spent (yeah, I have crappy insurance that won't pay for much) go down the drain...