Are there new and clear medical definitions between GBS & CIDP?
AnonymousFebruary 17, 2010 at 10:19 pm
Most of what I’ve been reading seem to make the delineations even more mushy at times? And therefore diagnoses. Such as some sources say neither GBS nor CIDP has ‘relapsing/remitting’ aspects yet many doctors seem to feel this is so…is it an aspect of prior experiences or training? What new is there to reinforce this concept?
Is there any government resource that ‘tracks’ OR DEFINES such things, aside from the NIH, and if so, who? Are there any insurance resources that do so or other sources?
I believe there was a European Conference about this issue about 2-3 years ago, but that site is no longer available… It had made many recommendations about research, tracking GBS and CIDP cases and what and how to do so… then nothing.
I am just curious what others have found other than the random research reports I have found…
Thanks to all in advance.
AnonymousFebruary 18, 2010 at 8:19 pm
IF I’d been properly diagnosed from the get go? I wouldn’t have all that I have going on.
But there is no research bubbling up about it in any real or true ways…Often there is or might be distinctions which could change diagnosis and treatments sooner and thus relieve the burden of long term immuno-suppresants or enhancers/boosters.
Oh well… thanks for the reply…
February 19, 2010 at 2:37 am
You have raised some great questions and getting a diagnosis and treatment sooner rather than later is one of the keys to dealing with this disease.
1. It is my understanding that GBS does not respond to corticosteroids, but that CIDP usually will get better with such treatment.
2. The eight week timeline to see if a suffering patient has CIDP makes no sense to me.
3. A baffling mystery is that GBS can sometimes evolve into CIDP.
4. There are many variations of these diseases and the individual symptoms are variable.
They eradicated polio with a vaccine. How do we know for sure that these rare and uncommon diseases are autoimmune?
I hope we can uncover more valuable research and that more and more research will be done.
AnonymousFebruary 19, 2010 at 1:17 pm
So they say GBS can evolve into CIDP. So what syemtoms occure to show that? I was diagnosed with GBS 25 years ago. They really new nothing about it then, so I could have had CIDP? I have no idea, I just know that it started with my feet and hands going to sleep, a month before I had a seveere flu like illness, and was so week I could not hardly stand. I was vomiting often and started stumbling when walking, then slowly all over the body had the feeling my feet and hands had. Within a month I was in the bed unable to do any thing for myself. ??? The doctors back then did NOTHING for me. Just sent me home and my Mother took care of me and about 8 or 9 months into this I began slowly regaining strenghth and learning to walk like a child. I regained full function but have dealt with extreem fatigue that seems to get worse as I get older. Depression, and very cold achy feet are also a problem for me.
So how do you know the difference? Maybe I need to do some researching and read it for myself…..just thought some one on this forum could simplify it for me. I have a very bad focus problem and the research causes me to become very fatigued, if that makes any sence.
AnonymousFebruary 19, 2010 at 9:01 pm
CIDP – It used to be ‘viewed’ that ‘chronic GBS’ . Until about 10-15 years ago they found different blood, spinal and nerve tests that showed variants. I don’t recall the wherewithalls but it was a European Neuro conference about 2-3 years ago. Ergo, in the first two years since I’d gotten what was ‘diagnosed’ as CIDP and not a chronic GBS I ‘wondered’ as more and more CIDP ‘variants’ kept emerging.
Harder still to grasp is that in my case ‘severe PN’ was my diagnosis as the ER Doc had found it on the ‘internet’…He didn’t read further. So I WONDER…truly wonder IF I’d HAD GBS? AND it’d been treated w/IVIG right off the bat, IF I would not NOW have all the other ‘residuals’? I did NOT have a spinal tap as initially promised nor any other radiological evaluations… I believe the ‘neuro assigned’ to me. He conducted my nerve conduction studies in a ‘room’ that had med journals dating to the mid-late ’80’s. Nothing more current. Can I say THAT was one RED FLAG?
Ultimately it scares me that others could be ‘misdiagnosed’ and thus left improperly treated and dependent of expensive or medications that can cause other subsuquent medical complications that we all don’t need! I suspect the numbers of inappropriately diagnosed folks are really suffering, needlessly because their docs either don’t care nor are curious enough to look deeper into all the symptoms and test results from the get-go!
Somehow in my heart, I believe that IF I’d gotten IVIG at the start, I wouldn’t be still having CIDP almost 7 years later!
As I said about others? For us, damages are done, we deal with it as we can, but the medical community rolls on in it’s either ego, insensitivity or ignorance about our problems. As more get more issues plus CIDP? and or GBS? I fear with insurance ‘pinches’ that we are gonna be left out in our wheelchairs in the cold!
God bless one and all! We all fight the fight as we can. How we can. As best as we can! AND we will have to keep on fighting….for a long time. I truly wish it were all easier for us to deal with! Hugs and hope to all!
PS: Survivor? I know what you mean and thank you! IF you find any goodies please post here and also PM me!
Katy -with you totallly about the ‘timeline’ things!
I’ve often said, great minds run in parallel tracks! No?
AnonymousMay 20, 2010 at 9:17 pm
amen regarding the ‘didn’t know’ doctors and the misdiagnoses. The NIH, John’s Hopkins and a recent GBS/CIDP Seminar I recently attended seem to say what you did, that is GBS is acute. The Seminar speaker stated if it’s longer than 7 weeks, it’s not GBS. Well, apparently treatment is the same anyway, right?
Try this site: [url]http://pnsociety.com/Guidelines_CIDP.pdf[/url]
They talk about guidelines for definition, investigation and treatment of CIDP. paper date appears to be 2005. pns = periperhal neuropathy society.
Perhaps this link is even better, it’s from this web site, somewhere, the paper is dated 2009 and the link is dated March 2010.
It is so very difficult to go to a doctor for an answer(s) and then find out later, oh, darn, that wasn’t right. You’re right, our damage is done.
AnonymousMay 24, 2010 at 11:44 pm
From all the studies I have read, GBS is sudden and acute. CIDP has a slower onset. Where doctors get into trouble, is when they confuse the lingering effects of GBS with CIDP. Unfortunately, very few studies have been conducted on GBS and CIDP. As to IVIG treatments, they only work in the early stages of GBS. IVIG does not cure GBS but is used to hopefully stop it’s progression. It will not help with the residual effects of GBS. Repeated IVIG treatments do, however, help those with CIDP. IVIG was not available when I had GBS, however I know people who got it and it helped to stop progression to total paralysis and I know others who had IVIG and it did no good.
AnonymousMay 25, 2010 at 10:50 am
I too feel like homeagain, that had I received IVIG, I would not still be suffering 6 months later. It seems to stop the progression and reverse the damage in most cases. For those of us that did not have it, it is more full blown and then takes a lot longer to recover in my opinion. I had very severe gastro problems to where I could not eat and lost 25 lbs. I firmly believe that had I had IVIG, it would have stopped the damages to my vagus nerve.
From all the posts that I have read, most people with “mild” GBS received IVIG and seem to recover more quickly than those who didn’t. I did not have a spinal tap as well. I kept begging for “treatment” and the neuros refused because I was still walking and my EMGs did not show anything in the beginning.
I saw a rheumatologist last week for my continuing issues. She basically said that it was probably “mild” GBS and has now evolved into something else, but come back in 6 months, and it could take 2-3 years to diagnose. Everything I read says that the earlier you get a diagnoses, the better. How does this happen?? I am so sick of doctors, I cannot tell you. I have not found one, aside from my primary ones, that have been willing to help me. Whatever happened to caring about your patients, trying to research to find an answer? I know that there are docs out there like this, but I have not found one yet. In fact, I called the rheumatologist’s office to ask some follow up questions and they said that if the dr calls me back, I have to pay $40 or make another appt. What is this? So now they just lost a patient over this….Sorry to vent on this thread.
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