Well, more questions for docs to read about from US?

February 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?