Lynda Klein
Forum Replies Created
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Wishing you the best with your journey. I was diagnosed in April 2020. My best advice is to pay close attention to your symptoms. It seems that you have a good neurologist. All medications work differently. They may work initially and then your symptoms might slowly return. Keep neuro very involved in all changes. It’s called the “snowflake disease” because everyone is different. Again….all the best.
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Not sure where you live but you need a new doctor. Try to find one that specializes in MG. I was diagnosed in 2020 and have been on prednisone the majority of that time. Mestinon helped a little in the beginning . I was on IVIG for a little over 2 years. Started at every 4 weeks and then to every 3 weeks. I had to stop the IVIG to join a clinical trial but still on prednisone. I’ve failed cellcept and Imuran due to side effects. I’m now in a phase 2 clinical trial. I won’t know if I’m getting the drug or not until the end of August. But I can tell you that my symptoms are now worse than bei started the trial. I have to decide whether to stay with it or quit and try something else. Wishing you the best but please find another doctor. Im also in the medical field.
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It’s not supposed to be. But, my Dad was diagnosed years ago and I was just diagnosed in 2020. I don’t think it’s been studied enough to make the correlation. But, if autoimmune diseases are in the family it’s more likely that something like this happens. MG can be triggered by a virus.
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Rocky….I was diagnosed in April 2020. Your twitching eyes are most likely related to the Mestinon. I take it when needed and notice that right away. When I don’t take the drug, I don’t have it.