I saw Dr. Nations at UT Southwestern today. She basically said she thinks I have Congenital Myasthenic Syndrome which means I was born with it and did not just develop it in adulthood. She thinks this because I have not responded to any of the treatments so far, so thats her conclusion. She wants me to go to the Mayo Clinic in Minnesota to see a specific doctor and have some more tests run. So, that is my mission is to get the appointment and everyone squared away for our big trip to Minnesota. Who would have thought I would be excited about going to the doctor, but if it means helps and understanding I'll do anything at this point.
She wants me to up my prednisone 60mg for a month just to try and see if anything happens. She also wants to stop my IVIG treatments, but I talked her into letting me finish out the month and do 2 more treatments and then stop, just to see.
So, thats the news. I didn't get the real answers I was wishing for, but with this diagnosis, things arn't crystal clear. So now my hope is in Minnesota and the doctors there. Road trip!!
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Did you test positive for the anitbodies? Thank you for sharing.
I am a retired navy veteran and was diagnosed with myasthenia gravis in September 2020. After a bout of left ear infection and TMD (Temporomandibular disorder), symptoms persisting were eyelid drooping, slurred speech, drooling and overall muscle weakness in the left hand grip, increased fatigue and unsteady walking. I'm now taking www. madibaherbalcenter . com herbal cure (3 months) and I have been receiving a great improvement since I started the remedy, I find joy in being able to go out by myself and catch a movie. “It’s been wonderful, and it’s been life-changing.
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