Myasthenia Gravis: Share your treatment journey

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Hope this helps. ~ John

Do you know if protien drinks are good to drink with this disease to help improve muscel sttrength

Hello @fguziejka, and welcome to Connect. Great question. I moved your discussion and combined it with another discussion titled Myasthenia Gravis. I did this so you would be introduced to the other members talking about it. While we wait for them to weigh in, would you mind sharing more about your diagnosis? What sort of things have you been doing to try and improve muscle?

Thanks for responding Justin I din't expect anybody to get back to me. I have all the classic things, the drooping eye started about a year ago, I went to a opthopmologist and she couldn't find out why from her tests, she told me I could have a brain problem and referred me out.

I never followed up on it.

June 4th I had what I thought was a stroke and when I went to the emergency room they treated it as a stroke, the blurred vision, the double vision, the speech really bad. The swallowing problem is the biggest issue and it's is been going on for well over a year before the drooping eye, I thought it was just acid reflux.
The neurologist that seen me in the hospital ran a series of blood test since a stroke didn't show up on the mri and the blood came back abnormal indicating to him the Myasthenia Gravis. He is treating me for it with two meds that are helping out but at night, voice is still almost 70 to 80% not understandable and the swallowing continues to be a big issue. Still real nasly in and out during the day. I have changed my eating format as well adjusted the types of foods I eat to make it more easily to deal with. He also diagnosed me with a brain tumor, so there's not much I can do with that at all. I was wondering since our muscles are going to become real weak and lead to respiratory death (possibly) if it wouldn't be a good idea to build those muscles up with a lot of protein to prolong the inevitable. Protein drinks for example. Again, thanks for responding to me. Frank Guziejka, CLU

I am dealing with the same problem you have, but not as bad. I've had MG for 5 yrs with mostly the droopy eye, but a month ago, I developed swallowing & talking problems. Was in the hospital 2 times in 2 weeks. Now on 40mg Prednisose,daily, Mestinon 60mg 4x a day & Cellcept 500mg 2x a day. It is helping a lot,but I am depend on the Mestinon. If I don't take it at the right times( every 5-6 hrs) or I get stressed,, my voice starts to get weak & I can't eat well. I have tried Protein shakes & fruit smoothies. They are filling, but I have to watch how much I take in, because I get diarrhea easy. Hope this helps & good luck with getting better

Hi. I am new here. Is there anyone here who also has this?

Hello @dragonfly430, welcome to Connect. There is another active discussion on Myasthenia Gravis. I'm tagging our Moderator @lisalucier to see if she is able to move your post to the following discussion where your post will have more visibility.

Groups > Autoimmune Diseases > Myasthenia Gravis*
-- https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/

Are you able to share a little more about your health issues and any treatments you have tried or found that helped you?

John

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.

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?