-
Amy Cessina replied to the topic Botox, Fillers, and Cosmetic Procedures With Myasthenia Gravis in the forum Healthcare and Myasthenia Gravis 1 week, 2 days ago
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]
-
Amy Cessina replied to the topic The value of a compassionate nurse when living with MG in the forum Healthcare and Myasthenia Gravis 3 weeks ago
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.
-
Amy Cessina started the topic I can’t believe this in the forum Coronavirus (COVID-19) and Myasthenia Gravis 5 months, 2 weeks ago
So I had covid in August and the flu in November. Despite the vaccinations for both.
I have acytylcholine positive MG for 5 years and also Hashimoto thyroiditis.
Now after both these viral illnesses I’ve gone hyperthyroid and have Graves. This is a super rare switch. Making my life miserable. Autoimmune diseases are the worst. Bottom line is pr…[Read more] -
Amy Cessina replied to the topic Have You Gotten Your Flu Shot? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 6 months, 1 week ago
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] -
Amy Cessina replied to the topic Have You Had COVID-19 with Myasthenia Gravis? What Was Your Experience? in the forum Coronavirus (COVID-19) and Myasthenia Gravis 8 months, 2 weeks ago
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]
-
Amy Cessina replied to the topic Valuable Lessons from Rare, Chronic Diseases in the forum Mental Health, Self-Care, and Support 11 months, 1 week ago
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%.
-
Amy Cessina replied to the topic Date Ideas That Don’t Require Alcohol or Excessive Energy in the forum Relationships & Social Life with Myasthenia Gravis 1 year ago
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]
-
Amy Cessina replied to the topic Thoughts on Clinical Trials in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 1 year ago
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]
-
Amy Cessina replied to the topic Actual Results using Vyvgart in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 1 year, 1 month ago
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]
-
Amy Cessina replied to the topic Mestinon in the forum Healthcare and Myasthenia Gravis 1 year, 1 month ago
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]
-
Amy Cessina replied to the topic How Do You Remain Physically Active? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 year, 1 month ago
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.
-
Amy Cessina replied to the topic Reaction to Myasthenia Gravis Diagnosis in the forum Healthcare and Myasthenia Gravis 1 year, 1 month ago
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]
-
Amy Cessina replied to the topic How do I know if I'm with the right Neurologist/Neuro-Specialist? in the forum Healthcare and Myasthenia Gravis 1 year, 1 month ago
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] -
Amy Cessina replied to the topic How do I know if I'm with the right Neurologist/Neuro-Specialist? in the forum Healthcare and Myasthenia Gravis 1 year, 1 month ago
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] -
Amy Cessina replied to the topic Any Tips For Traveling Internationally With MG? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 year, 1 month ago
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] -
Amy Cessina replied to the topic 4th shot? in the forum Coronavirus (COVID-19) and Myasthenia Gravis 1 year, 2 months ago
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.
-
Amy Cessina replied to the topic Spring and Self Care in the forum Mental Health, Self-Care, and Support 1 year, 2 months ago
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]
-
Amy Cessina replied to the topic Spring and Self Care in the forum Mental Health, Self-Care, and Support 1 year, 2 months ago
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]
-
Amy Cessina replied to the topic Does Temperature or Weather Trigger Your Symptoms? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 year, 2 months ago
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]
-
Amy Cessina replied to the topic What Are Your Life Passions? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 year, 2 months ago
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]
- Load More