Here is the site.
They are doing research on HNA and a few other genetic diseases. I have cited web pages before with previous research done by Drs Hannibal and Chance.
Subscribe to:
Post Comments (Atom)
skip to main |
skip to sidebar
Dealing with a somewhat rare nerve disorder.
World Community Grid
Search
Custom Search
Links For NA/HNA or PTS
- From rarediseases.org
- Finally a diagnosis but still more questions (From Well Blogs- NYTimes)
- Charcot-Marie-Tooth Association
- Neuralgic amyotrophy by Nens van Alfen
- Neuralgic Amyotrophy: Idiopathic and hereditary form
- The Experience Project Parsonage Turner Group
- Parsonage Turner Support Group on Facebook
- "Essential Tremor" Information
- The clinical spectrum of neuralgic amyotrophy in 246 cases
- The Dutch Neuromuscular Research Center
- Long-Term Pain, Fatigue, and Impairment in Neuralgic Amyotrophy
- Hereditary Neuralgic Amyotrophy on GeneReviews
- Plexus Disorders from Merck Manuals Online
- United Brachial Plexus Network Message Boards
- American Autoimmune Related Diseases
- AutoImmunity Community
- Parsonage Turner Syndrome on Healthline
My neurologists think I have brachialplexopathy, parsonage turner syndrome. Do you all have any information that might help me get better? Any studies going on?
ReplyDeleteJoshua Clarke
j8clarke@yahoo.com
The only study I am aware of is the one talked about in the post here being done by by Dr. Chance. And that is more towards the hereditary version of PTS.
ReplyDeleteThe good news is that there usually is some recovery in the first few years. You will have to work at it to keep your remaining muscles strong and have them help take over some function until you get any recovery.
The bad news is that recovery may not be to your previous levels, and that if PTS recurs, it could make you lose what you did not lose the first time. Generally, it does not recur unless you have the hereditary type. Check some of the websites I list to the right here for more information.