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Q&A with Australian Health Practitioners
Where can I find a myasthenia gravis expert?
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Is there anyone out there who would take on my case? I show all the symptoms of myasthenia gravis but no one believes me because I have tested negative to anti acetylcholine and anti MuSK. I have had no treatment at all for 2 years and I spend my life sitting on my bed unable to do much at all. I have all the ocular and bulbar signs, double vision, extreme fatigue from moving my eyes, slurred speech. Sometimes when I do too much, like walk around, gardening or look up for too long etc, I have trouble breathing and swallowing. I'm so sick of being dismissed but I need help. -
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Dr Simon Easterbrook-Smith
Health Professional
My research interests include immunology and the mechanisms of amyloid formation. The latter has implications for people who are dealing with Alzheimer's Disease, Parkinson's Disease … View Profile
It might help if you contacted the Australian Myasthenic Association:
http://www.myasthenia.org.au/default.htm
Although it is NSW-based they might be able to suggest myasthenia gravis specialists who are geographically convenient for you,
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Anonymous
Yeah, I did that. They are nice but can't recommend practitioners. Hence my desperation. After 2 years I figure I have to find my own help. I've been to one neuro who said I needed a tensilon test but it seems there is no tensilon available. I found out they've stopped making it and it is now called Enlon. There is a supply of it in the US and in India. I need a prescription to get it.
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