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...
Hello!
I have an telephone time with my doctor on tuesday 23th. I got it because I feel the Mestinon isnt helping me enough. Im now taking 50 mg 4-5/day. And it do makes a difference. But I still have a lot of symptoms. Its very up and down, I have much better days and then days that are much harder. I specially have a lot of problems with weakness over my chest. It feels sometimes like someone is sitting on the top of the chest, pressing it down. Its hard to take a deep breath. Sometimes Im losing my breath then I talk and so on. Often this is much better during the morning, and then it comes during the day. Often worse during the evening. Sometimes the Mestinon helps, sometimes not. Rest helps me, but I cant lay flat.
I dont know that to do. Should I beg the doctor to put me on another medication for example Prednisone? That medicine scares me but this do too! I cant live this way, not being able to do the simples stuff.
My diagnosis is not clear, I have possible MG, and the doctor has been very dismissive against me the last time we spoked. He is not convinced about my illness, but doesnt give any suggestion about other possible illness.
And my symptoms are very clear and it freaks me out!
So grateful for any advice!
I have an telephone time with my doctor on tuesday 23th. I got it because I feel the Mestinon isnt helping me enough. Im now taking 50 mg 4-5/day. And it do makes a difference. But I still have a lot of symptoms. Its very up and down, I have much better days and then days that are much harder. I specially have a lot of problems with weakness over my chest. It feels sometimes like someone is sitting on the top of the chest, pressing it down. Its hard to take a deep breath. Sometimes Im losing my breath then I talk and so on. Often this is much better during the morning, and then it comes during the day. Often worse during the evening. Sometimes the Mestinon helps, sometimes not. Rest helps me, but I cant lay flat.
I dont know that to do. Should I beg the doctor to put me on another medication for example Prednisone? That medicine scares me but this do too! I cant live this way, not being able to do the simples stuff.
My diagnosis is not clear, I have possible MG, and the doctor has been very dismissive against me the last time we spoked. He is not convinced about my illness, but doesnt give any suggestion about other possible illness.
And my symptoms are very clear and it freaks me out!
So grateful for any advice!
My breathing has been much better for about a week now after I have increased the Mestinon dose to 60 mg. At the moment I have got a cold, and now I only hope that I want be worse because of that!
The last time I visit the ER because I had problem with my breathing, they totally ignored it.
I read my journal today and the doctor have not even mention my problem with the chest and breathing. He just write that I was "worried" and that the diagnosis of MG wasnt confirmed.
Yes Im worried because he dont take me serious! Its so obvious.
Now Im waiting for a rehab-team and my hope is that they will listen to me! If they do maybe I will get proper treatment!