A few weeks ago, I saw a neurologist in Bloomington who ran several tests for different neuromuscular diseases. One that he thought may explain a lot of the problems I've had is a disease called myasthenia gravis which is an autoimmune disease that causes neuromuscular problems such as pulmonary weakness and significant muscle fatigue. Also, a large percentage of people with this disease have thymic hyperplasia. While the blood test for one of the antibodies was negative, there is a form of it called seronegative myasthenia gravis (SNMG). He started me on the medication called pyridostigmine to see if I had a positive reaction on Tuesday.
So far, my breathing has become easier and I can take deep breaths without feeling like I have weights on my chest. My walking has gotten a little better but not much. The neurologist's office said they didn't expect me to get completely better, they were just hoping for minor improvement.
They'll keep me on the current dose for a week and then increase the dosage and maybe add a few different medicines. Hopefully, this will be the beginning of the end to some of this diagnostic nightmare. I'll post more as I know.
6 comments:
We are cautiously optimistic...all fingers/toes are crossed!
This is such great news. I really hope you finally get some relief from this nightmare!
All the very best on this journey shawn.
My son is 14 and has had MG since he was 10. It can be a long journey to get the medication correct but well worth it. Once they get this sorted you will be able to live a pretty normal life.
Good luck and all the best.
Gerry, UK
This is a great way to start the new year!
-Karen Kaplan
I am so thrilled to hear you a direction to investigate. I hope you continue to see and feel improvements. :D
Fingers and toes crossed here too!
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