Myasthienia gravis
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wilson888
Community member Posts: 3 Listener
Hi my name is wilson I was diagnosed with myasthenia gravis almost 2 years ago none of the medication seems to be working has anyone had similar experience
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@wilson888 I was diagnosed with MG in my early twenties and if my memory is correct I was on mestinon and steroids. After neurological tests I went onto to have a thymectomy which worked for me. I gradually tapered off drugs and now I am almost symptom free except for facial drooping when tired.Unfortunately it was the start of my autoimmune journey. I'm sure treatments have changed a lot since the 80s. Good luck. Do you know you are entitled to free prescriptions? It was very rare when I was diagnosed 1 in 500,000.
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Thanks cressida, glad to hear you are almost symptom free, I would love to stop the steroids, I've just had ivig treatment 3 weeks ago so fingers crossed this works
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Hello @wilson888 how long have you been on the steroids for? Are you on Pyridostigmine? It's great you are getting the ivig treatment, I'm sure that treatments are much more efficient nowadays. Do they still carry out thymectomy? If you want to pm me for any details please feel free to do so. After I was diagnosed I did join an MG group, in those days it was f2f in somebody's home, before the days of internet forums . I assume you are under the care of a neurologist? Just to reassure you that my symptoms are very mild, the last time I saw a neurologist was several years ago and although antibody in my blood was fairly high I was not showing any symptoms. I just assume I am still in remittance.
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Hi cressida, I was on pyridstominge didn't agree with me bn on 150 mg Azathioprine daily for 18 month, prednisolone for 14 month was at 100mg every second day but down to 40 mg every second day, I can't walk very far my legs get so weak so do arms and chest muscles, so hopefully the ivig works
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