under auto-immune - that mite be relevant to a degree. In some ways, I think Liza Jane's worksheets were ahead of the 'curve' in the testing/diagnostic aspects? Here goes:
http://pns.ucsd.edu/Guidelines_CIDP.pdf
http://pns.ucsd.edu/Guidelines_parap...neuropathy.pdf
http://pns.ucsd.edu/Guidelines_multi...neuropathy.pdf
Host site is:
http://pns.ucsd.edu/
Interesting that it takes INTERNATIONAL attention to get the attention? DUH?
That most docs do not even KNOW of such 'guidelines' let alone follow them is abhorrent. Even the 'guidelines' allow for so many of the 'variants' we all have in terms of 'being easily pigenholed'....At least, it provides some basic standard for diagnostics? Any good outline to do so is a far better cry than it was, say, even five years ago? Not that it gets US anywhere sooner to diagnostics and treatments faster...
As for IVIG...it IS a blood by-product...as well as a blood product. How well it is handled along the way from 'gathering' to infusions is still a big issue for all who get it...or still allowed to get it? Seems that the Fed's interpretation of IT's role is to track the 'product' from collection to pharmacy...after that? all quality controls fall flat on their faces...substitutions/bad handling, etc are easy to occur after that sign off..I am surprised that the FDA sloughed off 'consumer's concerns' in their addressing of 'access to product' last year. VERY dissappointing.
As for IG tolerability? Had you had a IG A, B G[& subsets] and M testings? That is really the only way to determine which IG products are or might be tolerable to you...My tests were sent to the Mayo and Athena [tho 'fluids' were drawn here] I was told and thusly 'trained' by my first IG infusion nurse about this stuff...and, it's also laid out in a vague sort of way in each brand's patient information brochure [or whatever?].. Some brands have too much of 'this' or 'that'...amazes me how much the docs do not KNOW about the goodies?
I do not have the spinal issues [hey! Knock wood quickly?] My past lives indicate that I should? But don't??? That I have ONE key body part without issues is a sort of perverse source of JOY every day. This is, believe me, one aspect that is constantly checked, and re-checked..I guess because it would be 'easier to write me off'????Dunno.
As for incomplete diagnosis [ese]...well, dont we/aren't we all in that spot in one way or another? Then, all the other stuffs on stuffs happen that MAY or may not be ralated occur? THEN you find out that it all may be connected, and your brain screams literally SCREAMS! that YES it IS connected and no one 'tree' hears in a very big forest...Well, STUFF is DONE, Stuff Has Happened...go forward and fight and do it smart and well...how else can it be done? Key is good, valid, legitimate MEDICAL EXPERT diagnosis...then TREATMENTS...The rest is gravy in my book..It doesn't change the damage done...It helps one to live with the damage...Plain, simple [tho not really so?] but do-able to a degree.
Hang in there, Be as tough as I believe you are, and never, ever give up. If need be, PM me to have an extra wall to beat the head against...I've got my own scars and know how to do it best?
's - j