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 everyone! I am new to the site and glad to have found this group. I have been having neurologic problems for years now, without a diagnosis. My main symptom is that my muscles fatigue very quickly, especially my legs, which causes me to have mobility problems. Other symptoms include muscle weakness, neurogenic bladder, balance, cognitive, and I also have had some ptosis. Around the time I was having the ptosis I also had eye sensitivity to bright lights. I also have trouble with the heat making me worse.
The muscle problems started first and then several years later I started having some ptosis. I did take some photos of the ptosis and my eye doctor did send me to a neuro-opthamologist who confirmed it was ptosis from the photos, although I was not experiencing it at the time I saw him. A rheumatologist I had seen around that time had given me one dose of a steroid pack and my eyes did get better.
I have had blood test for Myasthenia which came back normal. I have also had EMGs in the past. I think my neuro did one of the single fiber EMGs a few years ago. My EMGs show polyneuropathy, but did not show the Myasthenia.
My primary recently decided to switch me to a new neurologist. My PCP said this sounds like Myasthenia. The neurologist I had seemed fine just seeing me a few times a year and occasionally ordering some test, but not really pursuing the answer much. He barely even did exams, just checked reflexes and strength of my legs.
I am hoping the new neuro will be able to help me. Not having a diagnosis is very hard. I have had some not so good experiences withndoctors in the past, so I am also nervous about switching neuros, but I know I am getting nowhere with the one I have been seeing. My appointment is next week. I am glad to find this group as I could sure use some support.
The muscle problems started first and then several years later I started having some ptosis. I did take some photos of the ptosis and my eye doctor did send me to a neuro-opthamologist who confirmed it was ptosis from the photos, although I was not experiencing it at the time I saw him. A rheumatologist I had seen around that time had given me one dose of a steroid pack and my eyes did get better.
I have had blood test for Myasthenia which came back normal. I have also had EMGs in the past. I think my neuro did one of the single fiber EMGs a few years ago. My EMGs show polyneuropathy, but did not show the Myasthenia.
My primary recently decided to switch me to a new neurologist. My PCP said this sounds like Myasthenia. The neurologist I had seemed fine just seeing me a few times a year and occasionally ordering some test, but not really pursuing the answer much. He barely even did exams, just checked reflexes and strength of my legs.
I am hoping the new neuro will be able to help me. Not having a diagnosis is very hard. I have had some not so good experiences withndoctors in the past, so I am also nervous about switching neuros, but I know I am getting nowhere with the one I have been seeing. My appointment is next week. I am glad to find this group as I could sure use some support.
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Is anyone here allergic to Sulfa that is currently taking Diamox? I have been diagnosed with IH now for almost 2 years. I am allergic to Sulfa drugs meaning that my throat will swell up so my Neurologist put me on Topamax. I was suffering from major loud whoosing noises and the topamax helped that but everyday I still hear those mainly between 6 - 12 pm. I am at my wits end and have not went...
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Wishing you the best. :)
Cpt.Weaver - Yes, that is a big frustration. Doctors usually don't want to give diagnosis or treatment unless they are certain. It seems they focus more on test results than patients and their symptoms sometimes. Thanks for reminding me I am not alone.
Yes, I definately get anxiety about neurologists. Some of them act like they don't believe you, or that I don't know what I am talking about when I mention muscle fatigue, or then there are some in the beginning who have tried to say it could be psychological. I was even sent to a neuro-psychologist in the past, She ruled out psych and said it was neurologic.
Once my neuro sent me for a possible muscle biopsy at a nerve and muscle center out of state. The doctor there would not do the biopsy, even though we had driven an entire day to get there. He accused my husband of trying to "lead" him whe he mentioned that putting a cold, wet rag on my eyes when they were droopy helped them.