Amy Cessina

Pardon but I think this post is misinformation. No one would ever cut you open and not remove the thymus. I believe the study group was split into two,  one got surgery the other didn’t. But you wouldn’t know at the start what group you would be assigned. And the surgery had to be crack the chest open style too not robotic.  There are strin…[Read more]

Ive been hesitant to reply to you. But since you mentioned in your post questioning your diagnosis. My aunt was treated for 8 years for MG that doctors convinced her she had. She had all the typical tests and they deemed her seronegative. She took a lot of powerful medications. Nothing helped. In the end she did not have MG and over the course of…[Read more]

To specifically answer your question. Mestinon will not deter a crisis nor will it stop progression of MG. It merely prevents acetylcholine  from being degraded quickly so it keeps your muscles functioning until it wears off in about 3 hours or so. Many people only take mestinon although sometimes it won’t seem like that from the posts. So ev…[Read more]

I walk a lot. But last year I invested in an electric bike and it’s great. I can keep up with my husband I just turn it on it has three levels of pedal assist and it doesn’t need a lot of effort at the top assist. Worth every penny.

I sat in a chair in my home and cried the entire day without moving and probably the next few days also. I didn’t even go to work and I didn’t go for about 8 weeks. I was on disability but not for the MG it was for anxiety. I went back to work after that full time. Haven’t looked back. Personally I felt like reading all the MG websites made my me…[Read more]

I understand MG and being cautious about medications. But what I also understand is I need my teeth drilled or I need to treat an infection or have surgery so I must use the medications on the list some times. I try not to take them, but in order to stay healthy I must sometimes use them.
If you are in the hospital with a life threatening…[Read more]

I have found when you go in with a long  list of issues they assume (falsely perhaps) that they aren’t all real. If you take the worst issues and focus the doctors on those, you might make more headway.
On that giant list of drugs they give you most say “ use with caution” only a few are serious reactions . I’ve taken many on the list with no…[Read more]

I have travelled internationally. But suggest not going anywhere you need to take certain prophylaxis medications like anti malarial or live vaccines. Those really kicked up my symptoms. I also make sure I would be able to get to a western hospital or doctor just for piece of mind.
Other than  that I just am sensible about food water sanitation…[Read more]

Why don’t you ask your doctors for Evushield. I heard it’s widely available for the immunosuppressed to protect from covid but nobody is prescribing it.  Seems better than getting repeated  shots with no results.

Thanks. The rare disease foundation I work for is neuromuscular rare diseases too. Funny I just can’t bring myself to say anything. Since my symptoms are mostly blurry vision which my glasses correct, and mouth issues for which I eat all soft foods . It wouldn’t be easy for them to tell. So I just don’t say. My limbs are all fine -so far -so I’m a…[Read more]

I agree. I like to leave in the flaws in the wood. I cannot reupholster I don’t know how. I just clean, slightly polish and even out the wood tones. I mostly collect all wood furniture. But I have one Finnish designer mid century modern couch that is danish modern in turquoise stripe original fabric, bit wobbly too. So it needs a big makeover b…[Read more]

I have strange symptoms when weather fronts approach that I never attributed to being from having MG. They all center around my face and mouth which is where I have the most trouble with my MG. And I get nerve pain around my head. I actually don’t mind the heat because I have hashimoto too and I always feel cold. But out  in the very cold we…[Read more]

Personally I want to own a horse for riding . I live on a lot of land and always wanted farm animals. But likely I can’t own much because where I live has some persistent bears and  a large pack of coyotes so it’s hard to have some animals but I think a horse would be fine. I have been collecting mid century modern furniture too and have some very…[Read more]

I’m really looking forward to the nice weather in the northeast after the cold winter. I like to walk with my dog and will now walk much further. I also count amphibians for a local conservancy group in the spring  to monitor the environment. It’s actually lots of fun and does not need a lot of strength to stand there and count and identify  fro…[Read more]

• Hello Mike, would you mind telling me what the Bactrim is used for and if that is long term? I hadn’t heard that treatment before. thank you.

After reading this post. I have to admit how surprised I am to see the number of medications people take. I am curious why up to three immunosuppressants are needed. Is that for just ocular symptoms? I really am interested since I have not taken these yet and I’d like to have information in case I need it. I know no others with MG besides people h…[Read more]

Hi Stephanie

Personally  I think you should listen to your doctor. Single fibers are done by highly trained doctors.  I wish you all the best. Consider yourself lucky you don’t have MG. Why would someone try to get a diagnosis of this terrible disease when it’s been confirmed you don’t have it.

Mine started in my eyes. Never had DV just blurry and ptosis. I am over 4 years out and am still considered mild. So it doesn’t necessarily get much worse but often does. I did overhaul my lifestyle and  strictly stick to it. Exercise and nutrition for me is very important as is sleep and stress reduction. Also it’s not a degenerative disease so i…[Read more]

I’m actually working in the office one day a week now. The rest from home. No one knows i have this at work. So far it’s been fine , we have to wear masks so there’s some protection there.  I’m actually enjoying myself because interacting with others makes me forget my problems.

I’ve taken amoxicillin, penicillin, cephalosporins, z pacs, beta lactams. All with no issue.