Amy Cessina

Kind of judgmental to say cosmetic procedures are unnecessary in comment one. This is supposed to be a support group. People have cosmetic for other reasons besides vanity. I had to get my naval area and underlying muscle fixed due to large hernia after three pregnancies. A plastic surgeon did it to minimize scarring. I did not have any increase…[Read more]

My son is a nurse and in the 10 years practicing he has only had one MG patient and he is at large east coast city hospital. When he told the patient his mother also had MG it made all the difference to her and she was very grateful she had a nurse who actually knew what the illness was.

I got the flu shot but not the covid booster. About three weeks after my son and I got the flu shot he got a full blown case of the flu. I however had just a sore throat and chills for a day and it never went further. So I was happy about that.
I don’t know what to believe about the covid shot seems like it’s limited protection for the new str…[Read more]

I got covid after attending a wedding stupidly without a mask. I had fairly mild symptoms but it hit me in the throat area mostly. Very bad dry Cough for a few days and pretty bad covid laryngitis and a mild sore throat. Doctors prescribed some steroid nasal spray and cough meds. I was negative in 8 days but very tired for two weeks.  I only had…[Read more]

Just to be fair the myasthenia gravis organization states about 10% of people are seronegative. Some say slightly higher but I’ve seen no data to support 30%.

Sitting around a roaring fire pit in the evening  or on the deck watching the sun set. Sitting at the beach in the evening because it’s not too hot. Going to the art museum. I like thrift shopping too see if I can find interesting items. And my husband and I decided to try all the locally made ice cream  in the area this summer to see which one…[Read more]

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]