When were you initially diagnosed? Are you OK now? MG really is tricky! I had never heard of it before either................Do you have the Musk(?) MG?
Missy has that one and it really affects her swallowing..........
You are so brave! I was so scared about the whole swallowing thing - it was truly terrifying!!!!
Do you have a good neuro? I for one am so thankful that I have Dr Ibrahim! He was a real life saver!!!!!
Today is my last day of IV IG - YAY!!!!! I get my PICC line out tonight and can resume my "normal" life!!!! Happy days are here again!
This site has been the best thing that has ever happened to me! Before I found this, I was so scared all of the time. I was afraid to even leave my home (for fear of another attack), but am so much happier now!!!!
Take care!
Erin
Quote:
Originally Posted by Gabe
Hi Erin -
I gave you the brief history of the MG drama in my life ... in spite of being diagnosed and undiagnosed then rediagnosed eventually there were a million bumps in the road on the way. I had never heard of it before and still only know a few people other than on this forum who have it.
My MG started with my voice and swallowing - then generalized to the rest of my body. Without IViG I have a great deal of difficulty with my hands - especially my fingers and it also affects my legs - feels like I am walking through a swamp with 10 pound weights on my legs. Most of my symptoms are manageble but the swallowing thing is the most challenging and probably the most dangerous. I just had aspiration pneumonia again at Halloween.
I am 45 years old now. I am a female in spite of my nickname Gabe - my real name is Gabrielle and my parents pronounced it more like Gabriel so my nickname is Gabe. I do have nightsweats and especially in the days following IVIG.
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