[dahlek]

Do I hear more than a crumb of FRUSTRATION in your postings? As IN you aren't getting anywhere as fast as you feel you need it? Keep at it! Keep slogging on...
As I've said many times, and will say again, more times...things aren't always what they seem.....it's just a matter of either putting the pieces together in the right order/sequence or batting yer head against the wall enuf times... Tests that show 'negative' results may show a series of 'borderline' results that SHOULD lead appropriately to MORE tests and test results? Goodness knows I went thru a mind-blowing, series of esoteric series of testings before I was diagnosed. IF I had not had two neuros who really, understood nerves and nerve pain, well...Honestly, I would not be here now? I truly was lucky in the 'doc' lottery, I am having heaps of faith that you will find them as well.
IF you read about Lymes' folks, you will know that what they HAVE is a REAL medical issue. Diagnosing it all is full of 'FALSE' Negatives and Positives...We are HUMANS we compensate, at times to our own diagnostic detriments.
I say this, as by the time I 'got' diagnosed? I really, truly felt at the end of my 'mental' ability to 'compensate' rope! Once the diagnosis came 'thru'...it was easy..merely a matter of what TO DO?

PM me please or post here questions about the 'risks of IVIG'...There are some, but IF you are INFORMED, it's an easy route...cost, coverages [insurance], access are a whole other kettle of fish. Yes it can be considered an 'invasive' procedure? But, compared to many, it's a nothing/no-brainer. There are others here who have benefitted from IVIG, not only Melody's Alan. It is a serious therapy, but compared to say, cancer therapies/ treatments it's a far, far less invasive and with far fewwer consequences. Hey, we go on with the getting on?

BTW I do not DO nor tolerate, nor accommodate well any SSRI's myself, some of the other SRI 'clones' don't do well w/ME either...Unless you like a quarter 'human' zombie? Re-visit the Stickies and re-review the whole MENU of optional meds used for Neuropathies...there HAS to be something in that list that could work for you? For me, It's the Keppra, for others not...My spanner in the works has been my cancer post-therapy med, an AI [estrogen blocker]...That can/has turned me into a screaming meemie at times...

Hang in there - something good for YOU IS OUT THERE! - j

[cyclelops]

Hey

I have had IVIG....I think it is safer than the meds. I can't have it anymore, as I do not have a serologically proven inflammatory condition. That is all I am saying. I think IVIG is the better option over some of the other stuff out there, but some of the other stuff, not all, is cheaper, so they put people on cheaper stuff.

IVIG is a blood product, and altho it is 'washed', you just never know if some prion gets thru....that said....it is the safest blood product out there, and that is why I think it is a BETTER option for many folks, over the hard core anti inflams that make you really sick.

I haven't had a sural nerve biopsy, so I really don't know if I have CIDP. I had the skin biopsy with positive results. I could have CIDP, it is possible, than I would beg for IVIG. I have 'idiopathic' (we are not looking for any more reasons) small fiber neuropathy. Plus 2 herniated discs, plum shot and calcified...that they can not get to, because of the 'idiopathic' small fiber. On the flip side, sural nerve biopsies damage nerves, and I don't want one, unless the genetic tests come back normal. If those come back normal, then I have a right to know if I have CIDP, as there is a treatment, IVIG.

I also had Lyme back in 1994, and assume I am cured of it and I won't live on antibiotics if they don't do any good. They are not good for the gut. I was treated with orals for 20 days in 1994 and 6 months of mixed in 2000. If that didn't cure me, it will likely kill me in the long run.

I am frustrated with incomplete diagnosis of people, jumping to treatments on folks who are not thru with diagnosis, and also, USING or EXPERIMENTING with drugs to see if they work when they do not know what is wrong with you to begin with.

You can treat a fever, but if you don't know the cause you can die of some illness while they are treating your fever....same thing with fibro, same thing with RLS and same thing with PN. There has to be a cause....acquired or genetic. Some stuff we do not know yet. That is fine, but if they have the means, they need to use it.

I think people need to have the option of making an intelligent decision, and often times we are asked to make huge decisions based on half the facts. Such as me getting 16 weeks of IV steroids....for what??? Later I get told it isn't autoimmune???? I needed that bone draining experience like a hole in the head!

If I have some genetic crud that can be tested for, well, fine, then here is the evidence, I rest my case, do the blood test....and I can live with the condition, what option do I have, and I don't waste any money on treatment for an untreatable condition, nor endure any adverse reactions, side effects from meds I do not need.

My insurance company paid over $1000 on Cymbalta and I took a total of 6 pills in two courses of that stuff. Some one paid for that in their premium, and it was uneccessary, so was the IV steroid.

I think a lot of docs, not all, but a lot of docs, are getting too many perks from drug companies and medical companies that come up with devices....I know of one who got $400,000 for 8 days of work per year...it is on the net. I know the institution the guy worked for and the device he invented and they hawked. Insurance companies are at the helm of the ship full of docs. My primary just quit because of it.

Buyer beware.

I am frustrated with the lack of up front diagnostics, the wasted money on off target treatment, not to mention the pain and suffering that folks endure when they have an incomplete diagnosis that is a fancy name for a symptom, not a cause of the symptom. In medical speak, it is called 'targeted exam' and 'target treatment', it is not wholistic, doesn't give the human being the whole picture before they make huge decisions on whether to take a potentially toxic drug or undergo a permanent procedure that could cause indelible harm.

I am not saying deny treatment to any one, I am saying....make sure you know what you are treating and that the treatment is appropriate, the risks acceptable and you end up better for it....not worse.

And there is a point, that some may find out we have an untreatable condition. That happens too.

What is frustrating me is the lack of imagination in Scandinavian naming and the assumption that every one knows that some ones son or dotter is their kid!!! For example....my kid 'Lars'...you know....I am Anders, and Lars is my kid...Lars Andersson....and he has a kid who is Anders Larsson....my lord!!! It goes on like that for perpetuity. And they have only 20 female and 20 male names.....it just goes on and on...They seem to have no identity crisis.

That is my speel today. I guess I got too long winded to get my point across. I do that, and get people confused.

[dahlek]

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