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...
Neurology appointment update:
I went to my appointment yesterday. I had taken my morning mestinon at 7, and my next dose was due at noon. My appt was scheduled for 1130, and he kept me waiting in the waiting room until 1215!!! Needless to say my eyes were misbehaving badly in there. The right one couldn't stay midline with focus into the distance. He again reiterated over and over how myasthenia is not a "slam dunk diagnosis" with me. I have negative antibodies, an "unclear" SMFEMG, and an "incomplete response to IVIG".
What the heck?!!! I'm so sick of not knowing what's going on. He told me to take my mestinon when I left (1:15) and time when my vision cleared up. It didn't clear really . He put me back on for ivig today and tomorrow starting at 3 pm. He was going to anyway, decided at the visit. I'm not sure why mestinon is not a miracle drug for me, either. During the visit he was scanning through my head MRI pics over and over again. We know I have a 6th cranial nerve palsy, and he can't find MS lesions. It's confusing to him why my symptoms are so bad in the morning, as well. He kept talking about how MS is not variable throughout he day. Then asked me to call him when my mestinon kicked in and symptoms abated. He still is confused with my diagnosis!!! ;(
Next steps are IVIG today and tomorrow, follow up with him on September 9, and second opinion with another neurologist in his practice (Roomet, the doc close to retirement, I had his name wrong earlier posts), and I need to choose either cellcept or Imuran to start. I'm so frustrated with my body and how it confuses the neurologist!
I'm working on this depression problem with Cognitive Behavioral Therapy, but how can I bend this situation to not be what it is? I am thankful that I can breathe well and walk, and to have my healthy family. I don't want to sound like a whiner, and that's how I feel, like I should t be complaining when so many other have it worse. Right now I take Wellbutrin XL 300 mg in the morning, but it isn't doing crap for me. I keep crying at every little thing.
I went to my appointment yesterday. I had taken my morning mestinon at 7, and my next dose was due at noon. My appt was scheduled for 1130, and he kept me waiting in the waiting room until 1215!!! Needless to say my eyes were misbehaving badly in there. The right one couldn't stay midline with focus into the distance. He again reiterated over and over how myasthenia is not a "slam dunk diagnosis" with me. I have negative antibodies, an "unclear" SMFEMG, and an "incomplete response to IVIG".
What the heck?!!! I'm so sick of not knowing what's going on. He told me to take my mestinon when I left (1:15) and time when my vision cleared up. It didn't clear really . He put me back on for ivig today and tomorrow starting at 3 pm. He was going to anyway, decided at the visit. I'm not sure why mestinon is not a miracle drug for me, either. During the visit he was scanning through my head MRI pics over and over again. We know I have a 6th cranial nerve palsy, and he can't find MS lesions. It's confusing to him why my symptoms are so bad in the morning, as well. He kept talking about how MS is not variable throughout he day. Then asked me to call him when my mestinon kicked in and symptoms abated. He still is confused with my diagnosis!!! ;(
Next steps are IVIG today and tomorrow, follow up with him on September 9, and second opinion with another neurologist in his practice (Roomet, the doc close to retirement, I had his name wrong earlier posts), and I need to choose either cellcept or Imuran to start. I'm so frustrated with my body and how it confuses the neurologist!
I'm working on this depression problem with Cognitive Behavioral Therapy, but how can I bend this situation to not be what it is? I am thankful that I can breathe well and walk, and to have my healthy family. I don't want to sound like a whiner, and that's how I feel, like I should t be complaining when so many other have it worse. Right now I take Wellbutrin XL 300 mg in the morning, but it isn't doing crap for me. I keep crying at every little thing.
Tibetian, this is the place for a soap box. We are all trying to figure this stuff out. My wife ordered the AcHR antibody blood test online even before I went to my General Doctor. We had the test in hand and he said he would have ordered a zillion tests before that one. Basically, my wife diagnosed me.