Myasthenia Gravis

[ErinV]

I will have the MG panel on Tuesday when the labs reopen, but since I've read that it is not always positive if you have MG I have a question about muscle soreness, since I can't find anything on it related to MG So here's my story: I am a 44yr old woman, was incorrectly diagnosed 4wks ago with mono (due to a bad lab). My main symptom is extreme fatigue - I only feel good when I am not moving at all, and that doesn't feel very good after a time; very boring. I felt too weak to hold even the phone or a book at times. So after receiving news that the mono was a past, not current infection, I went to see a neurologist Friday. He indicated no neurological issues were present, good reflexes, etc. He also indicated ( I am running out of energy now and my hands are arms are shaking so I will try to make this long story short) that I should stop laying around, it would only make me weaker. He gave me Lyrica. Apparently it stopped those signals to my brain that were indicating I was tired and should stop moving, because on his advice, I made every effort to ignore my body's demands to rest and only sat down when I felt I would collapse otherwise. So now every muscle in my body is sore, feeling exactly the same as if I worked out way too hard. Is this what happens to any of you, when you do more than your body wants to? Should I be resting or pushing myself? And when I say pushing myself, I mean trying to walk around a bit, stand instead of sit in the shower, etc. Can I do harm by working my muscles until they are exhausted and sore? Thanks - appreciate any advice you can offer. Best Wishes ~

[sewray]

I have alot of fatigue with the MG. I have been diagnosed since the end of Oct. of 2008. I have been unable to return to work since the end of Sept. of 2008. The biggest thing that I struggle with is the ability to have energy and stamina to do physical things. I have a severe case of the occular MG and some of the general MG. When I have done some physical things like walking or helping in moving things for very long or even working in the yard I get very tired and have to sit down or most of the time even take a nap. Then I feel better altho I do not get all of my energy back right away.
My muscles do seem strained and the doctors will tell you that there is no pain with MG. I had one neurologist tell me to rest and relax, so I did that for 4 months. The next neurologist told me to exercise and start rebuilding my strength. I believe that the second is correct. He did caution me to not over do it as the recovery time is much longer. I would suggest that you seek a specialist on myasthenia gravis. A regular neurologist will tell you that they are but they are not.
Go to a major clinic on Myasthenia Gravis and seek those who deal with it and are researching it. They are the ones to help you.

[ErinV]

Thank you for replying. I have to say, I find your post very discouraging :( I keep thinking that once I have the proper diagnosis, I will get the proper treatment and start feeling much better. You sound like I feel now, with no treatment! Are you any better since they started treating you? Maybe this is how it is for some people, but I keep reading about how bright the furture is for myasthenics these days. Surely everyone is different, but maybe you have some other, underlying condition(s)? I know how miserable this has been for me, for four weeks, so I can imagine you are at least as miserable X4. I sure wish you the best and a better control of your disease. I will check the references at our local chapter here. I have noticed that most posters talk about their neurologist, since this is an autoimmune disease, does anyone recommend seeing a rheumatolgist?

[sewray]

Thanks for the reply. Don't feel discouraged. I think that my problems are because I did not go to the specialists right off. I have improved and have hope that I will be able to live a normal life. My eye now are staying open and I have very little sensitivity in them for the bright light. My double vision is pretty much gone. I still struggle with the hazy vision but that might be something that will change over time. I am able to go and volunteer and do some walking and physical things that I have not been able to do. All of this since I started to go to the specialists. There is very little out there that I have found with regards to the rhumotoid arthritis and the relationship to the MG. Our disease is still alot of guess work. Still the up side to all of this is that they are able to treat the symptons and suppress the immune system to help us. It is a better future than we have had in the past. If you have any questions please feel free to ask and I will keep checking back.
Stuart.