Thread: Taurine
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Old 07-21-2015, 09:01 AM
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DejaVu DejaVu is offline
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DejaVu DejaVu is offline
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mrsD-
thanks again for these links.
I will check in on the member's posts.

The link for myopathies is a great resource!

I have had extensive work-ups over the years, including nerve biopsies, etc. I have sensorimotor axonal PN and other conditions - autoimmune in nature - and have had these for many years.

In the past 3 years, I have started to show more clear signs/symptoms of an additional neuromuscular condition. Neurologists had witnessed it first-hand in the ER when I had been admitted to the ER one night. Lucky for me I could see a neurologist to the ER -- That came about by my telling the Attending P.A. I refused to leave the ER until I saw a neurologist, even though the PA had already written my discharge note. After a short, yet intense debate, I saw a neurologist. The Neurology resident recognized the neurological involvement and the need for assistance within 5 minutes of witnessing the signs, which were profound by the way. (No idea why the PA could not see anything wrong. Since electrolytes were fine, he wanted to discharge me. I could not walk, could not use my hands, etc.)

We've done more testing including repeated EMGs, NCVs, labwork (including repeated paraneoplastic panels). I have seen a specialist in Muscular Dystrophies. A few MD neurologists have consulted and they all suspect a "myotonic dystrophy." We will be doing DNA testing soon.

I am being treated for "myotonia" in addition to being treated for PN and other autoimmune conditions.

Thanks again, mrsD. I deeply appreciate your insights and your kind assistance.

To Our healing!
Deja Vu
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"Thanks for this!" says:
bluesfan (07-21-2015), Burntmarshmallow (07-22-2015), mrsD (07-21-2015)