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Hereditary Parsonage-Turner
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Hereditary Parsonage-Turner

Have had neck and arm pain for about 13 years.  Pain increased several months ago, and I now have scapular winging and some atrophy of shoulder/neck muscles.  One doc says I have residual signs of Parsonage-Turner from many years ago (scapular winging).  Have done research myself, and this doesn't make sense since my pain increased several months ago and just now have atrophy and winging.  I found info on hereditary Parsonage-Turner.  If I do or did have Parsonage-Turner, the hereditary form, chronic type, would make more sense to me.  However, no one in my family has ever had a similar problem, and I'm tall for a woman and don't have hypotelorism.  Is there any way to find out for sure if I have the hereditary form?  This could guide my treatment.  Also, my children and siblings should know if I have something hereditary.  Is there any way to find out if I had the sporadic form of PTS many years ago?  Have had two recent EMGs, one month apart, with different results.  One showed problems around my upper scapula and neck muscles but no problem with triceps.  The other only showed problems with triceps; only one needle done in upper shoulder area on this one, which was normal.  MRI shows disk-osteophyte complex at C5-C6, as well as other problems.  Am very frustrated.  Would appreciate any suggestions.
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Individuals with the hereditary form typically begin having episodes as a teenager. Therefore, depending on your age this may not fit. There is no commercially available test to check for a genetic alteration, that I am aware of. Regarding the mixed EMG fidnings, I would recommend a consultation at a large academic center. They will be able to re-evaluate you and exclude other disorders causing your symptoms, such as connective tissue disease, vasculitis, or other primary nerve disorders. Good luck.
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when is it possible to post a question ?
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Usually you have good luck between 8am-9am EST.  Just keep trying.
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