Search found 5 matches

by elvenflow
Mon Feb 02, 2015 10:43 pm
Forum: Parents of OBPI Children
Topic: parsonage turner syndrome
Replies: 29
Views: 30030

Re: parsonage turner syndrome

I have parsonage turner secondary (this time, the first attack was after my vaccinations as a child) to a dental extraction last May. My great uncle got it after being gassed in WWI, so he must've been diagnosed shortly after it was named. Using a sling while walking has helped immensely, as has hav...
by elvenflow
Sun Nov 02, 2014 2:32 am
Forum: New? Start Here!
Topic: Heriditary Parsonage Turner Syndrome
Replies: 6
Views: 3531

Re: Heriditary Parsonage Turner Syndrome

Nerve disorders sure are individual, that is for sure. My grandmother tried everything including radiation and gold salts, back in the day. Hydrotherapy at an old time spa was amazing, she used to tell me about her visit to Germany. I wish there was more awareness of this. Dad's arm first became par...
by elvenflow
Fri Oct 31, 2014 5:14 pm
Forum: New? Start Here!
Topic: Heriditary Parsonage Turner Syndrome
Replies: 6
Views: 3531

Re: Heriditary Parsonage Turner Syndrome

I'm not sure if its in board policy to mention what I do, but I am in Oregon :mrgreen: and it helps a great deal. Did have to do a steroid burst with the most recent exacerbation, then I got shingles.... :roll:
by elvenflow
Wed Oct 29, 2014 8:44 pm
Forum: New? Start Here!
Topic: Heriditary Parsonage Turner Syndrome
Replies: 6
Views: 3531

Heriditary Parsonage Turner Syndrome

Hello, glad to find this forum :) . I have a hereditary axonal neuropathy. Parsonage Turner Syndrome. My Dad, my Grandmother and my Great Uncle had it, that we know of. I have had EMGs and been through the mill with doctors. Just lost all my teeth (tooth issues are related) and had a really bad atta...
by elvenflow
Wed Oct 29, 2014 7:29 pm
Forum: Parents of OBPI Children
Topic: Desperate father - PLEASE help.
Replies: 13
Views: 9934

Re: Desperate father - PLEASE help.

I have hereditary parsonage turner and my more affected left side is significantly smaller than my less affected right side. I have to wear a lift in my left shoe and adjusting my glasses to fit is a pain. No amount of exercise could change this in my case, its just a developmental thing, apparently...