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...
I started with ocular Myastenia in January of this year and before that I have had pains in my lower back that come and go I have acid reflux and for the last few years after being on my feet a while I would get weak break into a sweat and have to sit down. And now my eyes are doing better but I have hot flashes don't feel very well, my neck is sore all of the time as the day goes on it gets worse, my neurolgist said that was buldging disk they did MRI's and CT scans. I have told him I didn't have neck problems before the MG the mestinon and the prednizone. Seems to me my upper arms feel weak and my breathing has changed and this hot weather has really kept me in the house. I have told the neurlogist I have now I just don't feel good and he seems to think it will not Generalize from what I have read there is a good chance it will. There are other things I think that are happening but it seems they come and go and I really don't understand. I read some of what all of you all write and I am trying to understand but since this does everyone different guess nobody does. I am going for a second opinion in August from a new neurlogist. Maybe I just want to vent a little I guess a little angry I have been off work for 5 days for the 4th of July Holiday and haven't done a thing the heat used to bother me but not like now. I like working in the yard and being outside and have done nothing but sit in the house just feel tired. If anyone would have a opinion of it generalizing I would appreciate. If not thanks for listening to my vent.
Strength
Ange
When this disease kicked into high gear this past march, I couldnt climb stairs all of a sudden. I couldn't lift my arms overhead to dry hair or shampoo. Eye blur came along with that, as did breathing problems during an mg attack.
A rude neuro opthamologist laughed and told me to use eye drops (jerk). On my second neuro non and he seems unwilling to dx seronegative.
I notice things that I think are symptoms but I am admittedly very anxious and that tends to come out as a bit of - I don't know if hypochondria is the right word because people think that means that a person actually does it to get attention and that's not what it's about for me - but I find out a couple minutes later when I'm not thinking about it that they disappear. The doctors had me do a bunch of things like try to push against their hands, spread my fingers when they try to keep them from spreading, walk on my toes, look at things, count while I'm breathing out a big breath and they only found ocular symptoms, and when I described some things I thought might be symptoms one of the nurses thought I might be reading too much into it (it wasn't the way the symptom usually presents). I actually did feel reassured because I know I do do that, work myself up about things, and since this was a clinic that saw a lot of MG patients I kind-of knew that it wasn't really off to believe them.
You are getting treatment for your MG. You are doing all you can right now. There is no sense in beating yourslef up worrying about it generalizing. I would not expect it to do so and try not to think about it. Focus on getting better. Focus on feeling better everyday. How are your eyes? I imagine they are doing better now that you are on treatment, right?
Just know that anxiety/stress is not a good thing for MG. Keep that in mind and enjoy some peace.
Best wishes for peace,
TJ