Any references to CIDP here are on the 'Autoimmune board' which is slow. There are other resources...some in the stickies, others maybe not.
CIDP can have LARGE, MEDIUM And SMALL nerve fibre manifestations...it depends on the extent of the inflammation, how soon it might be tested and diagnosed.
I did have serum protien issues spinal wise, in my diagnosis, but also there were a bunch of 'signals' in my blood work-ups as well. I'd been tested for west-nile, lymes', you name it. and some of those tests were 'inconclusive', but since I'd been exposed to animals that had been diagnosed and died from W/N, Lymes and a few others..well, those titres would be off the norm...The keys for me were the blood work-ups eliminating a lot of issues, BUT still showing s/x's of inflammations, the spinals the same and the nerve studies....I for one, have all but the grossest of large fibre affectations.

This is NOT meant to be discouraging-BY NO MEANS! This means that diagnosis IS PART of beginning to live any life at all from HERE FORWARD! As many others have said, PAIN CONTROL is your starting point, finding what helps and not. Then, PT and getting some or most parts of YOUR LIFE BACK. Next after that is keeping on with the keeping on. The more you work to GET your body back and working, even at a lower level than before...the BETTER!
Yeah, I know what it's like to take a 10 minute 'excursion' to the bathroom, and then another back! I know what it's like to take a 10 minute effort to get UP OUT OF A CHAIR to make that excursion. My 'onset' hit me and hard! Docs kept understating it until I kept pushing docs to test [a la Liza Jane Worksheets- that I didn't know about at that time...] and got testing.. I KNEW IN MY HEART that something ELSE was going on...turned out so.
That I can still go out and 'shop' and go places [tho short distances and not for long] I think is pretty good as I almost was 'written off'. We each have to grab hold and keep of what aspects of our lives that we can handle and, if we pace ourselves do a bit more each day... Enjoy what all we can and work our way upward.
CIDP is diagnosed by the protocols Glenntaj cited. Blood work, spinal fluids assesments and nerve conduction studies...That's all there is, but IF you get 'em that's all folks! Next is treatments... HUGS - j

to all of you, dear friends. I asked my neurologist strait in is face - if it might be CIDP in my case and he said - absolutly not - and I want to belive him. AS far as I understand and read, the onset in my case, which prolonged for several weeks, seems to me as some virus attact or something like this. My symptomes are sensory in nature - numbness is the main symptom for now. no pain. no muscles weakness, I have balance and can go on my heels.
I think in my case - the neurologist is very confused: First he thoght of CMT since I have high arches and hammer toes but the nerve conduction test was normal. Then he started to check for SFSN - but the QST was normal.
All the blood tests that I did were within the normal range - so his conclution for now is that I have no nerve demage, but some problem with the comunication amonge the neurves themselves. He dosen't think that I have to do the spinal tap now, but only the skin biopsy, if I want.
I think I have to meet him again to reevaluate my case.
Meanwhile - I do Yoga and Tai CHI and Chi Kong and Pilatis and meditation which help me a lot. It is very hot here so I go to swim from time to time, but not enough.
I know that there is nothing to do and what I have is there. I dream ofcource about recovery,,,,. Sometime I think to myself - what does it matter what the name is and if there is a name to my symptoms - In any case there is almost nothing to do, just to relax and try to continue with the ruthine life as much as possible.
You are dear friends. I'm happy I found this place...

I replied to you PM as well, but since you added some stuff here . . .

There are hereditary neural conditions that can "imitate" acquired small-fiber neuroapthies/symptoms and that have predominantly small-fiber effects, although most of them don't have the subacute onset you've described--they tend to come on more gradually.

Still, I would lean towards a small-fiber predominant neuropathy with a possible molecular mimicry autoimmune etiology--you may well have gotten a viral or bacterial infection that your immune system attacked and fought off, but the structure of the pathogen was sufficiently similar to some part of you sensory nerves that the now activated immune system could not distinguish pathogen from self and continued attacking those parts of your nerves. I happen to think this process is more common among people labelled "idiopathic" than most neuros believe.

There are a number of acute/subacute demyelinating neuropathies (inbcluding CIDP variants) that have been associated with previous infection; no reason to assume this could not happen to the axonal fibers as well.

Take a look (at the herediatary areas, especially) at:

http://www.neuro.wustl.edu/neuromusc...ory-small.html

I would think that your doctors could at least look up/try some of the genetic test to "eliminate" known hereditary conditions. I can also say that my QST was normal, but my skin biopsy unequivocally showed small fiber damage--often it depends just WHICH small fibers have been preferentially attacked.

I just got diagnosed with this disease in March of this year but have been battling this for the past 5 years. Been going to see a pain management doc who is treating me like human guinea pig with meds that interact badly with the other meds I am taking. I am 40 years old and do have some back problems due to my military service 20 years ago. I know what it's not linked to diabetes since my blood sugar has been in the normal range.

I am wondering if there is any real cures for this because I don't want to live like many of you who have suffered with this for years. Don't mean to sound disrespectful to anyone here. I am suffering from intense itching and burning on both feet, also my toes are beginning to go numb and at times I am up for more than 24 hrs at a time when I have a major attack during the night.

Hi Majorcut & welcome to the forum, to get more exposure it's really best to post a new thread, but anyway, there are over 200 known causes for PN, it might help if you give more information, like what test's have been done so far besides Diabete's, have you been tested for prediabete's ? what was your b12 levels when tested ?, are you seeing a Neuro that is a PN specialist ? spinal taps, had an MRI on your back ? stuff like that may help.

No neuro at all just a pain management doc who got ****** that I went to my primary care doc for some pain meds when she couldn't be reached after I had a severe attack that last for 2 days. I haven't had a spinal tap and I have been tested for diabetes. So far I am not a diabetic or in pre-diabetic stage. What I have is idiopathic PN which means the docs have no idea on what caused it.

Majorcut,
Please post in a new thread giving your health history. Give us your symptoms, medications, what tests you have had done, etc. There are a lot of extremely knowledgeable people on this forum and we have a huge amount of combined knowledge. Just telling us you are idiopathic isn't going to get you real answers. I was labeled idiopathic until the proper testing was done. I now know what is causing my neuropathy, but it took the proper testing and the right type of doctor to find this cause. There are some answers out there but you have to help us with more than you have given us.

Oh..welcome to the forum. There are good people here.
Billye

IVIG has again been denied. My Dx: CIDP.
Insurance Co. now states reason for denial is that IVIG is not FDA approved, and not "indicated" for my condition.
I thought it was. But after having this conversation w/ Rep. from Humana, did a little research. one article cites only 6 "approved" conditions for IVIG & CIDp was not one. CIDP was addressed in this article. seems the issue (basis for insurance co. denial ) is FDA "approved" vs potential benefits, off label use of IVIG for the many conditons listed, inc. CIDP

http://www.emedicine.com/med/topic3546.htm

I'd been getting IVIG for few years. I'm "dually insured" --Medicare primary w/ Medicaid supplement . IVIG was covered by state medical assistance but since Medicare Pt. D, it's been denied.

Intend to appeal-again; Rep tried to help and re-appeal but was unable. said my DR & I will have to try again . I'm waiting to hear back from his office to see what/if we can do anything. At last apt. DR said IVIG is the treatmt I need but how to get (besides paying out of pocket for this expensive treatmt; cost of just drug is $3000-- so not an option for me)
I"ve gotten much worse since not getting IVIG.....

I know folks in this forum do get IVIG; some have addressed issues w/ insurance .
Does anyone have any suggestions, insight in what can be done? perhaps changing my insurance providor ??? I do have this option & Humana does seem a company that has had numerous complaints. Or will other Insurance providors also deny for same reason-- that IVIG is Not FDA approved, for my condition.

What are conditions/Dx which others are getting IVIG [paid by insurance]
ARe there better insurance co. , that will approve & pay for IVIG??
Suggestions, help in getting IVIG again, appreciated....


ps. .thought I was Posting this as New Thread, but it's here in this one RE: CIDP & related issues.
if there's a better place or way to re-post please advise. or if someone more adept could re-post for me?? connections problems w/ PC have resulted in losing posts, as well as other problems [mainly the neuro issues] w/ writing & posting. I'm needing any/all help can get in this matter. THANKS.

i made a new thread with pono's post.

i also made a new thread for majorcut including the post of replies.