for us all? In that we both suffer from degrees of 'demeyelination'. Just from different starting points in the body?
Cycleopes: Two key points in this all are that 1]demeyelination in MS occurs in the brain...and will usually show up in an MRI..tho not always[PN'ers are of course only 'findable outside that brain'?] and that 2] PNer's and MS folks both react poorly to anathesias of most types. ON the plus side tho is MS research has brought lots and heaps of info about the demeyelinating process [tho no cures...yet] into light..treatments are at the 'mouse model' stages...but PN'ers also have now their OWN MICE! That is not a 'resource' we had even five years ago. I am grateful for every mouse who is giving his life for all of us.
All sorts of PN conditions are being added to the St Louis site each year...I am surprised at how many are being added or 'clumped' or shoved into the square pegs that sort of 'fit'. When I was first diagnosed, I read extensively, and intuitively figured that dozens would be added in the next decade-that is happening. IN that respect, Glenn you are right...stuff is being 'dumped' into the PN categories, when they should be more rightfully be pegged as auto-immune or toxic. Further, those of us lucky enough to find good docs and get good medical diagnostics and then treatments are not the NORM! Currently it seems to me that the medical community has no desire to listen to general overall field concerns by patients..at all. That is sad, as they could learn LOTS from US...There are no vehicles for us to ask why 'docs always say..."It's in your head"...duh? based on what?'
Cycelops, I believe fewer sural biopsies are being done for the following reasons, as I have discerned from Insurance Companie's Policies and Procedures...found if you 'web' deeply enough? 1] it is an invasive procedure, leading to potential total paralysis if not done expertly and also severe infections 2] the procedure is only valid IF the biopsy sample is expertly handled from extraction thru analysis [rates last I read = 60% adequate handling rate...lo in my humble...] 3]Procedure should only beconsidered an option of last resort if multiple criteria [each company's #'s are different] are inconclusive. Lastly the Punch biopsies are only viable for small fiber neuropathies...to see what, essentially isn't there ...that should be. A sural biopsy only reinforces as a confirmation of what 13-18 other tests should already show. I declined and argued successfully as to why I was declining such a procedure to a top region's neuro department head! But then He also said I couldn't have CIDP because I wasn't in a wheelchair...Boy I set him straight on that notion! Like, DUH? I got diagnosed and TREATED IN TIME?
BTW only 50-60% of folks who try IVIG respond favorably...that doesn't mean they do or don't have CIDP or MMN or any others of the alphabet soups- IVIG is used for a multitude of immune issues as therapy...It just means, like all else we are all different, have a whole different set of other factors coming into play, and we all respond differently. Also, one can have nothing or a negative reaction to ONE BRAND of IVIG, but respond favorably to another...
Oh well, enough on my part here. On your part, I just wish there were more of the key 'positives and or negatives' that would lead to a clear cut diagnosis? I have learned tho, that sometimes, testing a few months later...say after some medication courses....and at different labs...things CAN come out different. I know folks with Lymes' and that is very often the case. Of course, my take on all this is one of the 'mere mortal- a patient', one who like many here THINKS about it all awake and asleep. Can't help it?
Silly 's to one an all - j