How can I tell if I have GBS or CIDP ?
AnonymousNovember 20, 2006 at 10:22 pm
I was stopped fairly sudden by GBS in Dec 02 and wasn’t started on Plasma Pherese for three days after I was completley I mean 100% parilyzed and now I can lift my arms a little and barly wiggle my fingers and breath and eat but is it possable that I could need IVIG treatments, could I be relapsing and not notice it, my neroligest died and I can’t find one that excepts Medi-Cal insureance so can anyone in Los Angeles help me find one or just let me know if I might have CIDP.
AnonymousNovember 20, 2006 at 10:50 pm
Just reading over your previous posts, it would seem as if you had/have GBS, simply because I struck you so quickly. IVIg or Plasmapharesis only help if your nerves are being attacked, so if it is GBS, then your nerves were attacked within those first 4 weeks, or in your case, within those first few days. Just as Gene said, if you arent getting worse, it [I]probably[/I] isnt CIDP. What kind of physical and occupational therapy have you, and are you still having?
November 21, 2006 at 2:25 am
medical in california should allow you to pick a health plan other than just straight emdical…find out for sure because I know Kaiser is on the list of ones to choose from.
No one would see me either when I first got sick because I had no insurance and then had straight medi-cal. I cant tell you how hard that was…maybe you know.
Call your worker and ask about picking a health plan….I sure hope this helps and you are able to get in to see someone.
AnonymousNovember 21, 2006 at 11:48 pm
I’m only getting range of motion but I’m signing up for a semister at Cal state Norhridge for wet and dry therapy with my Super Great Sister to assest me when she’s not caring for my 101 year old Grandma I still need to be assesed but I think I’m ready maybe over due but I can’t wait.
AnonymousNovember 22, 2006 at 9:56 am
I am very, very curious as to our ‘expert’ opinions as I was reading the cidpusa.org web site yesterday and when I read the following it was like a BIG light bulb going off – or do GBS people suffer the same way????
[I]Early on the person has to use their hands to go upstairs or rise from the squatting position, these are signs of legs becoming weaker.. Some have difficulty to maintain their blood pressure, burning sensations like, Reflex Sympathetic Dystrophy. [/I]
The past few years have been very frustrating as I go through periods, like once a month, when I am down and hurting very badly all over. But to see it in print about the ‘rising from a squatting position’ was so totally me! Do GBSers have this same problem. I know it really won’t make a big difference, but maybe?!?! I told my old neuro about this several years ago to no avail. Also, note that my reflexes have never returned. And I have major balance problems especially in the dark or when my eyes are closed like in the shower. [I](Edit: Also, I have had an increased white blood count and low grade fever for years?!?!)[/I]
Thank you all for your opinions! After the first of the year, I might try to find a new neuro (on my latest insurance list) and see if I can get some help.
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