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Myasthenia Gravis: Share your treatment journey

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

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@tammy72

Anyone else ever in no man’s land that finally received answers from Mayo? I have had 2 neurologist say that I am showing all signs of general mg, although testing is not adding up. I have been hospitalized for an mg crisis and had IVIG therapy., on Mestinon, extended release at night and 30 mg of prednisone for months, use a walker and have to minimize activity greatly or I decline. I have been to several doctors and am now being referred to Mayo. I am so tired of not ‘living’. I really want a treatment that will allow me to live a normal day and hopefully return to work. One physician believes it was triggered by breast cancer and my immune system not turning off and now fighting good cells. Stage 4 survivor in remission.

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Replies to "Anyone else ever in no man’s land that finally received answers from Mayo? I have had..."

Hello @tammy72, welcome to Mayo Clinic Connect. I understand the frustration of not being able to live a normal life and the need to return to work. It's good to hear you are a Stage 4 survivor in remission. You mentioned you have been referred to Mayo Clinic. I have no experience with MG but can tell you that Mayo Clinic is very good at diagnosing and treating patients. They are patient centered and the different areas work as a team to help diagnose and treat patients.

Here is some information from Mayo Clinic that may be helpful on Myasthenia gravis Diagnosis & treatment:
-- https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/diagnosis-treatment/drc-20352040

Do you already have your Mayo Clinic appointment setup?