Amy Cessina
Forum Replies Created
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Thank you for the herbal remedy suggestions. I tend to let stress get the better of me luckily it doesn’t affect my MG yet. I mostly have a health anxiety as many of you might be able to relate to. I’m usually worried that my MG will get worse or I might get something else. Seems to calm down for a while then something will trigger it back. I suppose that’s how it works just can’t seem to break the cycle.
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It might be barometric pressure issues with the rain or weather systems. I know it swells up membranes. If it only happens during weather events might be that. But hard to say.
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After I was diagnosed they scanned my thymus and said they saw “something” . Went to three different surgeons and they all said something different. The last surgeon was pushy and I left with a surgery appointment because of the pressure. The day before surgery I bailed out. I’ve had repeated scans without any real diagnosis or change in my thymus. In fact my thymus is shrinking . I have a mild case and my neurologist agrees with my decision to not go through with the surgery. Sometimes surgeons just want the business. I have late onset . But I will check occasionally by scanning. It’s been 6 years since this happened. Sometimes I feel thymus removal is junk science and sometimes I think it’s not. Because it working seems so random. Seems like a personal decision. Despite thymus removal being routine it’s not a trivial surgery.
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Slightly confused by your post. Diagnosis of Ocular MG means it is just in the eyes. Are you mis diagnosed still?
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I exercise every day mostly. I heard it helps control weakness. But I also heard that is if MG is well controlled exercise is fine. Exercise assured me that I am good. So mentally it is a positive for me.
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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 in symptoms. I’ve had non invasive treatments such as facial peels and I also had very painful spider veins on my legs treated. I had filler on my face which I didn’t like at all was not worth it. None caused any issues. My neurologist says the non invasive procedures I had done don’t affect the muscles.
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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.
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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 strains. Plus I had covid three months ago and three shots already. Continual boosting for me isn’t something I want to do. It’s a personal choice not advice for everyone one. I don’t take immunosuppressants. -
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 one booster shot last November so I didn’t have much protection left. I will get the new booster later in the fall.
it did not kick up any MG symptoms thankfully because viral illness in the past caused Mg symptoms . I am antibody positive MG for five years now. -
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%.
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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 ones the best. We go to local farms or farmers markets to buy fresh produce, meats and cheese because I won’t eat anything fake or with chemicals in it. They usually have shops or some sort of area to walk around. We go out every Sunday for coffee at our local shop.,
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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 stringent standards for clinical trials that have to be approved you can’t just do what you want to a human being and call it a clinical trial.
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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 eventually you have to know your body , symptoms, progression so you can best treat the severity you have. I have not taken any strong medications myself after many years of this disease. But if I needed to I definitely would. I constantly put up with annoying mild symptoms of the face area that I wish I could rid myself of but I follow my neurologists advice.
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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.
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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 mental health worse. Plus the information is always worse case scenario. I wish I hadn’t read some of it to this day.
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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 infection or other life threatening illness unfortunately doctors sometimes do not have a choice. But if you are hospitalized they can god forbid help you breathe while they heal you, I’m sorry I can’t say I would stop a doctor from saving me by waving the MG medication list at them. -
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 issues. But I do avoid the antibiotics that are known to cause exacerbate. -
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 etc so I don’t get sick or food poisoning.
The first few trips I over thought everything. Now I just relax and enjoy myself. -
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.
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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 weather my tongue feels like it’s 20 pounds!
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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 valuable pieces I’d like to decorate my entire house in that style instead of much of it being in the attic and garage.
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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 the 8 years of heavy duty medications she ruined her health so badly she is now in a wheelchair. Boss loss, bone fractures, spine fractures. Messed up all her bones her intestines and her peripheral nerves. seronegative can be slippery slope. As for my aunt she had no other disease, So it was all the medications she didn’t need making her so sick.
Plus if you ladies are anywhere near menopause or perimenopause that process makes one feel very badly too. Aches, joint pains, weakness, tingling, nerve zaps and headaches and even short of breath. -
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 able to function fairly normal.
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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 but really beautiful. Hoping someday to find a reupholster place to do right by it. When I see it in my garage I tell myself you need to stay healthy because this has to get in the house someday. Funny my sons girlfriend is a teacher and she sometimes borrows props from my collection for their school play!