Tuesday, December 13, 2011

Let me repeat- This is great information- A must read for NA sufferers or caregivers


From : [1] Information on hereditary and non-hereditary Neuralgic Amyotrophy for patients and caregivers
http://www.umcn.nl/Informatiefolders/7130-Neuralgic_Amyotrophy__id-i.pdf 

One thing clear in reading this paper is that my weakness is explained totally by Neuralgic Amyotrophy. No other undiagnosed disease is necessary. It states in other words, that as nerves re-grow, it is possible to regain movement of a previously lost arm function, for example. But, the nerve re-growth may not be complete, allowing for one use or maybe a couple, before having to take a rest. The stamina to have multiple “reps” of an exercise for example, is reduced. The muscles used fatigue very easily.  Maybe, this is what my neurologist was attempting to tell me a few years back. He just did so very badly.  This guy nails it. 

One other thing relates to balance (inner ear) function and hearing losses.  I have had a bit of changes to particularly my left ear. I have constant tinnitus. I have on at least two occasions had vertigo type sensations. One of those was with Nystigmus. Again, I thought these symptoms may be related more to other diseases than Neuralgic Amyotrophy. This paper explains that although it happens rarely, NA can impact hearing and balance. My ears were not impacted this way until after my NA attacks.  

My mind is a bit more at ease since reading this paper. 

Overall, if there is only one document you ever read about the causes and impacts of Neuralgic Amyotrophy, this one would be among the best. It has a lot of information and is very easy to understand.  I have included a permanent link in my Links section of the blog.  

2 comments:

  1. Hey
    My name is Daniel, and I'm suffering NA.
    I would really like to chat with you on facebook or something and ask you some questions about the symptomes and generally about this disease.
    Thanks!

    ReplyDelete
    Replies
    1. Hi Daniel- I am a member of the Facebook group "Parsonage-Turner Syndrome Support Group" http://www.facebook.com/groups/20873316586/
      Find that group, and ask to join (there is a button upper right area of page) I am there along with many other people who have this. If that does not work, let me know and I will figure out something else.

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