Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

 
 
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Old 01-28-2011, 03:14 PM #12
busybusy busybusy is offline
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Join Date: Nov 2010
Posts: 58
10 yr Member
busybusy busybusy is offline
Junior Member
 
Join Date: Nov 2010
Posts: 58
10 yr Member
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Quote:
Originally Posted by motorcycle diva View Post
I am new to Neurotalk and am looking forward to visiting people with MG. It is very misunderstood. I look very healthy but we all know that looks are decieving.
This body has been very good to me for many years and now I am looking for ways that I can help it get better.

I love to ride motorcycles and MG just slows me down sometimes.

I am taking Imuran and have stopped Prednisone and Mestinon. I was given IVIG last year and felt great for several weeks but the cost is crazy high.

Has anyone had systemic muscle pain? I have been plagued by muscle pain from head to toe since stopping Prednisone and continuing on Imuran. How about you?

I had so much pain in my legs for several years that some days I could not even let my feet touch the floor due to being so sore. I have had to let my husband help me walk across the room before because of the soreness in my feet. My neuro also said pain was not part of the problem but the muscles could become fatigued. He doesn't discuss the pain issue either since that is not a symptom. Since I have been on Mestinon, the pain is so much better. Some days I don't even have any (for the first time in several years I have had relief). If I stay on my legs a lot during the day, especially wallking, they begin to tire and hurt again. They even hurt lying in bed when doing nothing after having a hard day. I was told by my MD to live with the pain. When you begin to age, you will have pain and you have to learn to deal with it. I also am not a medicine taker. If I ever took a Tylenol or Advil, people knew something was terribly wrong. I can say I am much better since I began Mestinon. Although, I take the generic form of Mestinon because of my insurance. I hope you can find some relief and get to feeling better soon.
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