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Old 03-27-2009, 10:14 AM
dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
Default I agree with Mrs D about 'healing'

Thing is, less is known about nerve healing than there is about nerve damage/death! Snails and mice seem to be the current 'research animals'.

Nerve death and regrowth pains are very similar. In my own experiences [full-out CIDP] the onset pain was fairly consistent peripherally...and excruciating. As it progressed, it was a humm or buzz that worked its way up my limbs to points well, unmentionable. Pain killers really don't get to cut the pain all these minute nerves are experienceing when dying or being stripped of protective cover [meyelin sheath].

Treatments are limited: Plasmapherises [sort of like a dialysis for the blood]; steroids [stopping immune system attacks]; IVIG [infusions of immune globulin - a portion of donated blood that outnumbers the IG's attacking your nerves and demeyelinating them]; and for some, pain killers work to ease the overall pain. That is IT!

As for absolute diagnosis? Well, based on what I've read in your postings, you have many issues which can overlap or contribute to an acquired immune system response [which is what CIDP is]. Just take a look at this index for an overview of how many things can happen... they all make diagnosis harder than it would seem. It covers a lot of issues you have had and might have. Nothing is stand-out tho?
http://neuromuscular.wustl.edu/alfindex.htm
It IS a very BIG index! But a good one.
Look up all the details about the different MG and CIDP variants...their diagnostic distinctions and differences...they are often subtle.

As for treatments for CIDP? Other than prednisone [which was nixed from the start for me] the alternative treatments are invasive, extensive and VERY costly - it helps if you have super insurance!
I've been on IVIG for five years with only one bad infusion incident and it's kept me able to move and function...tho to a far lesser degree than before! At least I'm not in a wheelchair! Also my muscle functions have not been too badly affected nor, it seems, have my autonomic functions [WHEW!] .

As for tingles? Keep telling yourself that any feeling is a GOOD THING! Why? the alternatives aren't acceptable! EVER. It's amazing how our thinking can help us cope with things and often aid our bodies in healing. I get random sharp ZAPS [for want of any better word] in affected parts and I just tell myself-it's a new nerve! It wants to know what to do and is announcing itself that 'I'm here-now what?'. These usually will take my breath away for a minute or three and then go away. They happen about 3-10 times a day - I welcome them, tho they are startling.
ANY FEELING is better than no feeling at all! Just keep telling yourself that.
Hope always - j 's
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"Thanks for this!" says:
Kitt (03-27-2009)