← Return to Undiagnosed Neuromuscular Disorder: Searching for Answers

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Hello @chamiltonatc,

I would also like to welcome you to Mayo Clinic Connect. Most of the members of Connect understand the difficulty of having a rare disorder that is difficult to diagnose and/or difficult to treat.

I would also recommend, like @lioness, that you seek a second opinion. I would also recommend that you get your second opinion from a research/teaching medical facility. I'm thinking of a university medical school and/or a Mayo Clinic facility (there are three Mayo Clinic facilities in the U.S.). If you would like to schedule an appointment at a Mayo facility here is the link for appointments, http://mayocl.in/1mtmR63.

I applaud you for going through the counseling process. It is helpful when you are dealing with frustration in seeking a treatment plan and/or a diagnosis. Could you share what the most difficult symptom you are experiencing right now?

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Replies to "Hello @chamiltonatc, I would also like to welcome you to Mayo Clinic Connect. Most of the..."

@hopeful33250 Thank you for the recommendation on a second opinion! Right now the most difficult symptoms are my numbness/tingling, because I don't know what is causing it and my neurologist also does not seem to have anymore ideas. But also my decreasing fine motor coordination and dexterity in both of my hands. I work in Physical Therapy, which is a very hands on field, so my decreasing ability to use my hands for long periods of time makes me worried for the future.