Just Like Post POLIO
[QUOTE=ali]Sylvia,
I too had GBS in 85, with plasmapharesis. I like the way you worded it when you said … [I]”complete recovery” meant you walked again[/I]. Unfortunately, I think the same is true with many doctors still. Not only that, many seem to ignore it in the hope it goes away when some people have “a milder” case – as if there is such a thing!
Not only GP’s, but hometown Neurologists dont want to admit that there is such a thing as [B]Post GBS[/B], regardless of what some research has shown what happens decades later. The neurologist I went to told me that there is no way it was post GBS as once you have recovered, you ARE recovered and one doesnt have residuals and its almost impossible to get it again (A few months later I hand delievered a pack of info to her with quite a snotty letter and some research papers). A friend of mine is a nurse and without me knowing, asked a neuro in the local hospital about post GBS, he said that it was highly unlikely because its so rare …… AAAAAAAAAAAAHHHHHHHHHH! Do I even need to answer that?? :rolleyes: Fibro was also thrown around by my Rheumotologist, actually what he said was something like [I]you show symptoms of Fibro. [/I]
Long story short, the last few years have been horrible .. tingling, weakness, total fatigue, pain etc. I now have a family practitioner who is willing to listen, which takes a weight off my heart. I am on 60ml Cymbalta twice a day and it has done WONDERS for me!! I am also on Provigil, which Im trying to wean off …… Not only do I hate taking pills, but both those are sooo expensive, so if the Cymbalta does wonders at my new dosage of 60ml x 2 a day, they hoepfully i dont need the Provigil anymore.
P.S. I am a key note speaker at a conference for docs and nurses for the INOVA hospital system (N.Virginia) in September. I dont know how I am going to explain to so many skeptics that there is such a thing as Post GBS. When I was contacted, the lady told me she had asked a Psychiatrist to speak about the ‘effects’ of GBS, he replied that it was an acute illness from which you recover fast so there wasnt really anything to speak about :confused: Boy, if he knew what many of us knew he wouldnt be so flip![/QUOTE]
If you research Polio and Post Polio you will see the same battle that Post GBS’ers that do have Post GBS fight, more and more research is showing the effects on axons and damage done. When you say Post Polio now most doctors know what your talking about–this took decades to accomplish and to this day I’m sure there are Doctors out there that DON’T believe in Post Polio as a matter of fact it took till 2003 for Social Security to reconized Post Polio–DI 24580.010 Evaluation of Postpolio Sequelae
A. BACKGROUND
On 7/2/03, SSA published SSR 03-1p, “Titles II and XVI: Development and Evaluation of Disability Claims Involving Postpolio Sequelae.” This Ruling is published in its entirety in DI 24580.010 and replaces the previous text, “Evaluation of Late Effects of Poliomyelitis.”
Wouldn’t it be great to see a Evaluation for Post GBS too,well maybe it could happen some day. If you ever ask a doctor about POST GBS maybe you should ask them their thoughts on Post Polio then ask what is the differance in the Axon damage. God bless–Dan