Amy Cessina
Forum Replies Created
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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  frogs and lizards that are going to their ponds to lay eggs. I also collect and refinish furniture from mid century. I work full time for a rare disease foundation too although no one there knows I have one too lol. Just had my annual physical and a 4 year follow up at neurologist with EMG testing . All normal. Even my usually low vit d was in the right range. So I’m all set for the spring and summer!! .
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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 here so it would be helpful to me. Plus hearing your stories also has been helpful. I am only 4 years out but neurologist says it can come on anytime. Thanks
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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.
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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 it doesn’t cause destruction of your muscles. I visit the doctor for every issue and keep up with all routine exams so I stay in good health. I see my neurologist every 6 months.
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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.
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I’ve taken amoxicillin, penicillin, cephalosporins, z pacs, beta lactams. All with no issue.
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I’m very curious why the doctors suspected lymes and lupus. Was it a droopy eye?
My issue  now is everything is blamed on MG and they don’t look beyond that. Kind of a double edge sword we deal with. -
Btw I was considered  late onset for a female. I do worry it will ruin my retirement. I’ve worked my entire life and I feel distraught at times this is what I’m now stuck with. I’ve tried for years to try and mentally accept this but I am not there yet.
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Thanks for this. I agree . I think it goes a lot more to your body than doctors think. I can see by just reading many posts here how people are frequently dismissed by their doctors.
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My doctor says everyone has low d . I’ve taken vitd for years  without any rise in levels. So I suppose my body knows where it should be. It’s not completely bad but borderline every time. (20) no matter if I supplement or not and I get that exact reading for a decade.
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Doctors say this disease stabilizes after 7 years. But who knows they say a lot of things I have found just not real life. Recently I have a lot of pain in neck and arms. Worry it’s something new. Plus every time I have dental work things kick up in my mouth area, even just a simple filling.
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It hasn’t altered mine. Although I got laid off during the pandemic and found a remote job that I like very much and  pays the same salary and bonus. I have mild symptoms and only. Do not take immunosuppressants. I still do not want to get covid or any other illness since my MG was triggered by a viral infection.
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I dislike posts on covid because.they can wander into this great divide.  But I am glad everyone here has recovered and I hope the best for those who have lingering  issues. I think people should stick to the topic at hand and I believe posts with vaccine or treatment mis information  should be rejected.
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Your response doesn’t resound with me. Covid kills many more people than the flu. Do what you can to protect yourself but don’t get fooled into thinking this is the flu. Flu cannot eat your lungs to the point you need a double lung  transplant or cause long term neurological damage. I’d rather work off this is a very serious illness I don’t want to get it. The next variant maybe won’t be so tame.
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I don’t take any immunosuppressants currently. But I’ve tried to look up what it does to your body to clear all your IgGs from your blood. I couldn’t find the answer . It seemed the side effects  listed aren’t that bad.
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Nope just the malaria drug I took to go to India and iodinated contrast dye for A Ct scan did it to me.
I’ve taken  a number of antibiotics on the list without any issues. Neurologist said antibiotics that are the bad ones are usually only given in hospital setting. -
Yes dizziness, they don’t talk about this much but due to vision issues.
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I don’t think spreading a potentially deadly virus is a freedom or a choice. We should protect other people. I’ve said this before my son is a nurse on a covid floor of a large philadelphia hospital. The people dying are organ transplant, immunosuppressed  and cancer patients. It is not fair to compromise their lives so you don’t have to wear a mask or get a vaccine. Plus my son said all the unvaccinated immediately go to the hospital demanding treatment even if they are mild. So I guess they aren’t adverse to pumping themselves full of medications that were approved by the same FDA  that approved the vaccines.
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I had the booster shot and aside from arm pain, chills, and  fatigue for a day I was fine. I can believe there are triggers for MG being viral illness and vaccines etc. I don’t understand it completely but they say similarity with epitopes on acetylcholine  receptor and virus. So mistakes it  and makes the bad antibodies. My MG was triggered by a severe respiratory illness somewhat like covid but years before the pandemic. Strangely enough a man at my work visited his family in Wuhan  China of all places and came back sick , came to work sick and coincidently spread a viral pneumonia to his coworkers (actually my entire department) including me. I got MG very rapidly after contracting this horrible virus which sickened me for 5 months and three hospital visits to recover from the virus let alone MG.
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Doesn’t the drug work by clearing the auto antibodies to acetylcholine receptor. The obvious approval are acetylcholine positive. Then they have to study if it works for other types. Doctors can still use it off label just have to get approval from insurance.
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Just curious if anyone is having trouble with appointments at these large hospitals due to the recent covid surge?
But just to second others, gets the most extensive work up your insurance will allow. It gives you the most information. And yes many of these doctors are condescending. Go with someone you can talk to and work with. Don’t put up with nonsense. -
- 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.
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Why not try tacromilus. There was just an article in it saying how well it works for MG.
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- Bill its wonderful you’ve made so much progress this year. Must feel really good!