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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)
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@darlia

Hi Michelle,

I also have Peripheral Neuropathy caused by a rare FGFR3 ANTIBODY.
I am being referred to the Mayo I n Rochester also and I live in NE Missouri. Recently I have been having contractions of my right upper arm and hand which usually happens at night when I've been more relaxed. My hand wants to tighten and form like a "claw". It's happening for like 1hr when I get it. Found massage helps for the arm part to calm down but so far the Dr.s haven't told me what it could be! My neurologist who I look to for answers has not had an answer. So let me ask you, which specialists have you seen?
I hope you get some answers too. Many people post on here, so maybe we'll get some help here!
Darlia

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Replies to "Hi Michelle, I also have Peripheral Neuropathy caused by a rare FGFR3 ANTIBODY. I am being..."
Jim, Volunteer Mentor | @jimhd | Oct 20, 2017

Hi, Darling @darlia - I'm waiting to hear from a neuro specialist to call and give me an appointment. This one has a double specialty - neurology and ENT. I have several issues going on at once, so there are multiple and overlapping conditions.

You're fortunate to live near a Mayo, where so many good specialists work under one umbrella.

My idiopathic pn has small fiber, myelin and autoimmune involvement, along with other things that seem to overlap pn.

I hope that both you and @michelewithonel find solutions and maybe some resolution at Mayo.

Jim

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Jim, Volunteer Mentor | @jimhd | Oct 20, 2017

@darlia - oops! Again, I demonstrated the benefit of proofreading. I didn't intend to address you as "Darling". That's what the dumbphone comes up with, not for the first time, I'm sure, when Darlia is entered. Sorry.

Jim

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