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Questions posted in the
Neurology and Neurosurgery Forum have been answered by doctors from The Cleveland Clinic Foundation.
Question Title: Obtaining a DiagnosisForum: Neurology Forum
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After seeing several physicians (three of them neurologists), I still do not have a definitive diagnosis for a condition that has plagued me for over a year. I have weakness of my facial muscles, including drooping of my eyelids. I have difficulty chewing, swallowing and talking. My neck, shoulder, and arm muscles are easily fatigued. By the end of the day, my hip muscles feel weak. At times, I feel as if I cannot breathe "completely." Rest improves and exertion increases the symptoms. The first neurologist I saw did several tests including a tensilon test which was positive and blood work which was seronegative for MG antibodies. He began tentatively treating me for MG with Mestinon. The Mestinon improved the symptoms, but did not relieve them completely. Prednisone was added to my treatment (I was up to 30 mg per day). Because the Mestinon and Prednisone did not completely relieve the symptoms, he decided that I did not have MG and that my symptoms were psychological. I sought the opinion of another neurologist. She reviewed my records, said that I would have been better with the medications if I truly had MG, and told me that she felt that the facial weakness was caused from my having a "busy face." She told me to stop taking all medications and I would feel better. I knew better than to just stop the Prednisone, so I consulted a neurologist recommended to me by the Myasthenia Gravis Foundation. He said that he felt I had MG, weaned me off all medicatons, and was going to re-test after I had been off the Prednisone for two months. I saw him today, and he has decided to send me to yet another neurologist before putting me through the stress and expense of re-testing. It will be another two months before I see this physician. I realize that neuromuscular conditions are difficult to diagnose, and that there is a lot of gray area in my symptoms. I DO NOT WANT TO HAVE MYASTHENIA...but I would like to know what is wrong with me. It is becoming increasingly difficult to work and care for my children and I would like to find an expert to help me secure a diagnosis (no matter what that diagnosis is...even crazy would be better than nothing!). Do you think that anybody at Cleveland Clinic can help me?
= Thanks for the question. Sounds like you have been having a difficult time as of late. MG is a disorder of the neuromuscular junction. You fit many of the symptoms associated with MG. Some patients are seronegative for the receptor antibodies. Three separate tests can be doen - do you know if they were all sent? Another helpful test is a EMG repetative stimulation test. This should only be completed by a lab well versed in this procedure. I'm not sure what your problem is but I think your time would be well spent by a trip to CCF with one of our neuromuscular experts. If you wish a consultation call 216 444 5559. This information is provided for general medical education purposes only. Please consult your doctor regarding diagnostic and treatment options.
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