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Myasthenia Gravis: Share your treatment journey

Autoimmune Diseases | Last Active: Oct 21, 2022 | Replies (93)

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@nelisabeth

I have posted earlier in the MAC group but have just this week been told i need to be tested for Myasthenia Gravis. aaaaaaaaargh!????
Eye Dr. thought it was necessary to git er dun now. Have appt for bloodwork on the 5th of Jan. ... fasting .... but i have learned that it does not always show up in bloodwork. ????? The bloodwork will not be back when I see my primary care doc on the 10th. Have hip replacement surgery scheduled for the 23rd. A friend whose mother struggled with and finally died from this auto immune "thing" recommended a Dr. James Howard ... neurologist at UNC in Chapel Hill. i live five hours away! I have put in place all that was suggested to me in the forum on MAC. Have a date with ID doc in winston on the 6th. Also deal with PPS .. post polio syndrome. I am 76 years old an got the Polio virus when i was 4 during the epidemic here inN.C. Spent 7months in the "camps" that have been called The Miracle of Hickory, N.C. Learned to walk again an my parents NEVER treated me as a victim of anything ... ergo i have never percieved myself that way! Have always been VERY active and an activist! . I have been attributing things that are new and "not nermal" HO! fer me to PPS. Am not sure anymore what is the right question to ask! My friend said Dr. Howard invented the machine that can test for this "thing" that will not make you feel lak you b gittin electrocuted! I have had tests that feel just like THAT several times in the past. PPS being the answer. Here's a question. Do you know someone in Winston Salem, perhaps, a neurologist who is closer? Am supposed to have hip replacement surgery on the 23rd Jan. 2017 after having had to cancel surgery the 19th of this month as i got sick! I am SO GREAT FULL for this site. Thank you for this site!!!!!!!!!!!!!!! Merry Merry evrybody!

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Replies to "I have posted earlier in the MAC group but have just this week been told i..."

Hi @nelisabeth,
Wow! You have led an active life; thank you for sharing your history. Even though you are going through so much, @nelisabeth, I love the positive vibe in your post!

I'd like to introduce you to a few members who have dealt with Myasthenia Gravis: please meet @saur1994, @socalgal, @gretagean, @harmony4life, @iggeez1416, @mom2mba, @rickg, @dogmamat. I am confident that they will join the conversation to help you.

Some of our past members, @chazmen5, @doggyjon, @fireball1, @artisticgypsy, @negcarlson, have discussed PPS, and I hope they will return to offer some more information about Post Polio Syndrome.

As for finding a neurologist in Winston, Salem, I'd like to tag @maryjo2sell, @rosesareredmylove2016, @worriedson, @msaliceinpain, @dutchgirl1, and see if they have any recommendations for you.

@nelisabeth, although it's great to have a word-of-mouth recommendation, have you tried looking for a neurologist on the internet, as @katemn suggested?