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May 17, 2018 · Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments in Just Want to Talk

Sita..I understand Mayo is now treating ME. I read about this online. I do a lot of research. They don't take Medicare though.

May 17, 2018 · Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments in Just Want to Talk

Sita, I lived in Montana and got no help there with getting a ME diagnosis. My PCP and a rheumatogist tried to help, but the neuros were awful. I went to Salt Lake City, Utah (930 miles round trip from where I lived in Montana) had an EMG/NCT that was abnormal, a diagnosis of Myasthenia Gravis ..then neuor in MT disputed diagnosis. I understand there is a clinic in Salt Lake, Bateman Horne Ctr that treats ME. Self-pay of course.Stanford University in California has over a year waiting list and the cost is $8,000.00. I was fortunate to get diagnosed when I moved back to VA, but my neuro is not an ME specialist, does prescribe Mestinon, and some support. My PCP doesn't know how to help me. Most of us cannot afford to go to the ME ctrs or even travel due to this illness. .I'm with you..another known,, accepted diagnosis would give us support and treatments and hope! I wish you could find a dr to help you. Sendign you support and good wishes.

May 17, 2018 · Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments in Just Want to Talk

I am happy to find this group. After over 6 years of seeking help, I was diagnosed with M.E. by a neurologist. My journey has been long and hard, as have most with this chronic and debility, systemic neurological illness. Was first diagnoised with MS, then not, then Myasthenia Gravis, put on Mestinon, which does help, then not. I have other, complex and puzzling symptoms such as Diplopia, Dysphagia Dysarthia and more. .Am now struggling with severe swallowing and speech issues. Recent appts and testing with Speech Therapist, three ENT drs diagnosed and documented swallowing and speech as severe and progressive. Recent consult with a new neuro: diagnosed with Dystonia, a Neurological movement disorder. She is referring me to NIH for evaluation and testing. I get discouraged and frustrated, then bounce back with new determination. Finding others with similar issues and challenges has bee so helpful, as I felt so alone with all of this before.
Elik