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Old 02-16-2007, 01:35 PM #13
dahlek dahlek is offline
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Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
Default Gee whizz! I'd like to know too!! ??

It's one of those hit or miss things....in terms of treatment-well, it works/helps or not. In terms of recovery-well it might or not. Plain and simple...since use of IVIG for Agressive PN's and any follow-up research vis-a-vis IVIG's effectiveness and use for GBS and CIDP is little to none...very little has been published other than summaries and recaps of the last 15 years worth of work.

As for the 'whole being plugged into a bag' thing...well, for me, given the other whole TWO options in the world, it was ultimately a total NO BRAINER! Really, when you think on it, it's essentially a 'pasteurized/sort of homoginized processed blood product.. Can't bet much more basic than that. Options for me were Steriods-a no go due to osteo issues and plasmapherisis...more invasive still. Invasive only because the 'product' is foreign, and the infusion IV line is foreign also...

It's 'invasive' because, like chemo or any runof the mill vaccine...something 'not of yourself' or foreign is being introduced to your body. And the general s/e's of IVIG are headaches and flu-like sx's which last from one -5 days after for a monthly recipient [such as myself]

I really don't know IF it will clear the psoriasis....you can learn that there are sooo many anti-bodies and other genetic thingies that can be tested for...but, you reach a point where it just isn't worth the knowing! I don't know about the OCD/Auto-I connection at all...wish I could help you there...but some of those sites I listed should have good, solid references or resources for it... Different aspects of auto-I conditions affect different parts? that's pretty much my take on the heaps that I've read...

I wish Kmeb were on line...she's had 'puter problems and 'puter DEATHS of late....She too is an IVIG recipient, and could address it maybe better from her viewpoint.
Melody, all in all...science has some 'clues' as to how and why nerves die or are affected....Not all tho. They have fewer 'clues' as to the how and why of nerves regrowing....I simply want YOU and ALAN to know of, and learn and realize all the pros and cons of the whole aspect of treatment[s] before you commit yourself. The KEY THING HERE IS: Whether it works or not! IF it doesn't work, for you...doesn't mean it's garbage...More likely just not what YOU need! It's very much like the whole which-meds issue...in that some work long-term, short-term or not at all...others with side effects we probably would not want our worst enemies to feel. It IS, really, all a throw-of-the-dice thing overall. For you and Alan's sake, it's sure worth a try!

Does this all mean I should put in the 'stickies' my ref.sites on CIDP and IVIG? Will/Would anyone actually read them? Forgive me for being a tad cynical here, but it seems that there's more 'eddication' to be done?

Hugs to all! Pain free moments....seconds even to boot! - j
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