Gee Ali…I got it into my brain a totally

September 29, 2007 at 9:43 pm

different way? In that……
IVIG: is considered an ‘immuno-modulator’ that may or not, over-ride the immune ‘cascade’ that occurs in any person’s systems. That means essentially that: It either OVER-rides what is going on in the immune system vis-a-vis the meyelin and other nerve cell destructions OR in large doses, re-programs [optimistic in my view] existing malfunctions in the immune system. I have seen no evidence that IVIG ‘totally or even actually over-rides’ immune-malfunctions..

CURVES aside, plasmapheresis is probably the most acceptable and available way to ‘eliminate’ massive immune globulins in any persons’ systems…but, compared to IVIG it’s a far more invasive, thus one prone to extra infections, process. Honestly, I would LOVE to see some ‘curves’ giving the pros and cons vis a vis IVIG. I gathered going into the IVIG process that it’s a 50-50 success/fail rate..depending on who is doing the documenting…I feel that the DOCUMENTATION aspects regarding the success or failure of infusions is due to a lack of interest for getting ON LABEL approval by manufacturers…I really do NOT know why the mfrs do not pursue ON label approvals for CIDP? My perception is laziness…Unless you are on Medicare.. I am not yet, but will be in enuf years to make advocacy matter.

As for STOPPING progression, IF your immune system is going bonkers, well, It’s gonna take a lot of ‘modulations’ to keep it from keeping on going on. In my case, It is just that – SLOWING down the numbness crawl up and thru my body to that equalling a mere micro-march. IN all honesty, micro-marches have to be far better than other prognoses’s I’ve had that indicate that I SHOULD BE IN A WHEELCHAIR now…I have not accepted that, and I’ve a library of documentation to bolster my own philosophies..

As for reaching a bottom of any CURVE…what are the parameters and/or Standards of definition of such CURVES????? I would really like to know IF I have ‘bottomed’ out and am on the re-bound? That kind of ‘carrot’ would be a plus in my book! Sorry, but…WHAT ARE THE CRITERIA???

I do not mean to be either controversial nor adversarial here…but, did Dr Cornblath explain the distinctions between GBS and the chronic versions? There are over 20-30 variants of CIDP these days and new onew are added daily [so it seems] that take the CIDP definition miles further than a GBS basic definition. Actually according to the University of St.Louis [wstul] web sites the CIDP category has more than doubled in the two plus years I’ve become web-conversant. Definitions are becoming more mushy and variants are appearing to be in ‘the mix’…

This all is scary in that, diagnosis becomes harder…and treatments/therapies even more hard to get…

I don’t know about you, but getting the ‘diagnosis’ I have, was hard enuf…I sure would hate to have to jump thru more HOOPS???

Well, we can discuss, argue or ignore…I’d rather discuss?