long way to diagnosis
 

As you knoe already - according to my neurologist I have probably SFSN but he couldn't say for sure.
Searching in the internet and reading here (beside getting some remarks from some of you) couse me to think that it might be some kind of CIDP...
If you diagnosed as CIDP - I would like to hear your stories, how was the onset and the diagnosis.
Sorry for budering you with my questions, but I found that I have to do the work to help myself.

Thanks in advance

Hi Rina:

My husband Alan was diagnosed idiopathic over 15 years ago, they did a spinal tap earlier this year and they found protein in his spinal fluid which led them to believe he had autoimmune stuff going on.

He has been on IVIG for some months now and while it did nothing for his pain (the sponges between the toes helped a lot with that), the IVIG did help with his balance. So Alan has other stuff going on besides PN in his feet.

It all started with a mild discomfort 15 years ago, (he thought he had Athlete's foot). It got progressively worse over the year and then 6 years ago, his feet became completely numb and he could no longer drive. His hands and arms are not affected. Just his feet.

His neuro things he has CIDP and that's why he got the IVIG.

So keep asking questions. Somebody besides me will pop up.

Melody

Rina
 

Don't forget that this is a holiday week-end here in the USA. So the forum may be a little slow until people get back in their daily routine.

Billye

Rina You are right!
 

'I have found that I have to do the work to help myself' Sad but true fact tho. I am betting that you are now running on pure instinct, scared, running on empty and not getting a lot of home or medical support and help.

IN my case I'd gotten pneumonia before a Christmas [forget that holiday!] Had the P until I got an all clear in early the next Feb. I'd been working part-way thru my 3rd round of anti-biotics and was more than glad to stop. Finally got rid of the 'cough' and all that did to tire me out and well 2 months later...numb toes, week after that tingling toes, week after that Feet numb and tingling week after that BURNING[at this point called GP who gave me neuro references-make an appt w/one], week after that [we're on week 5 from the start of numb now] SPREADS TO THE ankles. Call GP w/a What to DO? GP says go to ER. After waiting for 13 hours in the waiting room when the numb/burning/needles worked their waup up to the knees....got seen. Some blood work, told I had a 'neuropathy' and was admitted [once they had a room] 9 hours later. I was evaluated that 'day' 24 hours after going to the ER] by a PT person who essentially put a 'harness' on me and watched me walk. Hard to do while toting an IV POLE? Actually I was using the pole for 'balance'. The stair 'evaluation' was interesting due to the IV pole...good thing the tubing was long? Or, not. After 3 days of not sleeping, being put on narcotics to help me sleep at ten PM the following evening Neuro came in and woke me up to 'tell' me what I had...I politely told him I'd just started to sleep after 3+ days of not doing so, could he come back later? OK...never saw him in the hosp. later. The ER doc came in about and hour after that trying to tell me 'he'd found a 'diagnosis' on the internet. I again, said what I'd said to the neuro... I was discharged two days after being 'admitted', no more the wiser. But I did get some info in writing and told to see the neuro who'd treated me - This was not the one I was scheduled to see the following week. Called GP who said go w/the admitting doc. HE mis-diagnosed me. After 6 months of ignoring my concerns about spreading pain and numbness I decided to get 2nd opinion w/the neuro I was originally scheduled to see before I got hospitalized...He started to do all the rite testing [tho on a very SLOW schedule in my view] so I went to a near by Univerisity Neuro dept...By luck I got the dept head. Boy! Did tests and more tests and even more test follow after that! From my appt 8 months after my 'onset', then the testing to 13-1/2 months after being hospitalized I was on IVIG. Yes nerve conduction tests can hurt and be invasive. Yes, Spinal testing is as well, but the MRI's X-rays, Cat Scans are not and I've not regretted any test at all. By this time, I'd found this site and some others, and I learned that I not only DID NOT want a full sural biopsy, but if needed I'd accept doing a 'punch' biopsy as Nide44/BobB recommends. I also found that most major insurances won't pay for the sural b. anymore...it's considered outdated. I'd one neuro Hot to do surgery on me and I never saw that guy again! I figgered he wanted 'the practice' -ON ME? No thanks! NO WAY!
The scariest part about it all is that docs are trying to tell you stuff in a 'simple way' but even simple you cannot process it...you are too scared about what all IS HAPPENING TO YOU! You have no control and it's not just scary, but terrifying. I was not internet savvy at the time I kept 'plugging' at getting other docs to tell me what might be going on. I just knew I had to! I have never regretted that I did and I know I would either be dead or in a wheelchair IF I had not kept at it. I know many here and elsewhere have lived thru decades of misdiagnoses before getting things right. I was lucky that it took just 14+ months, I know of one person who got diagnosed in 5 months. The most confusing part of it all is that CIDP and other issues [in my case a cancer diagnosis-2 years after onset and Hashimoto's thryroid-this year] can complicate overlap and it all. Even tho these other issues weren't 'present' at first. The hardest part as many others here have said is that FEAR FACTOR! You just have to CHILL and chill hard, or you are simply going to make things worse. Do get copies of all your medical records and tests and read about what all is in them and LEARN. You only can fight this fight...learn to speak more clearly about what YOU think is going on and convince docs to test and treat you right!
It's not easy, but caving in is easy...being bedridden and in a wheelchair is easy. YOu gotta put up a fight or this stiff could get ya!

:hug::hug:'s and I hope this helps? Pain free minutes at the very least! - j

My first experience with CIDP...
 

Hi Rina...

Here is what happened with me...
I woke up in early July with my arms and legs aching like they never had ached before…both upper and lower parts of all four limbs… I thought it must be the flu too, but like one I never had before.. I began to suspect maybe tick fever (lots of deer around here)… I went to the my pcp four days later (July 8th, 2005) and he prescribed anti-inflamatory pills (thought I had pulled some muscles and ordered blood tests)… July 11th I began to feel the tingling on the very tips of all my fingers and toes… The next day the doc doubled my anti-inflamatory dose and put me on a muscle relaxer saying it should work in 4 or 5 days… On the 16th the pain moved into my hips… We went to see my husband in a play on the 17th and I had to pull myself up the stairs by the railings to get up on the stage… The weekend before I had just walked up the stairs… On the 18th I went back and received a steroid shot which he said should work in 2-10 days… My husband had an appointment for a check on the 22nd (a Friday) and I begged him to tell the doctor that I wasn’t any better… The thought of going even two days through the weekend when no doctor was available was just too much for me… I had been sleeping on the recliner for about a week at this point when the pain moved into my back and upper chest… The pins and needles had moved all the way up my hands and feet by this time too… Went to the doc again on the 26th and he ordered an MRI… My doc was on vacation the first week of August so I asked if another doc could look at the MRI… At this point I seemed to be sleeping all the time in the recliner… Finally began using an air mattress placed on top of a twin bed… It was like sleeping on a cloud… The doctor that looked at the MRI referred me to a neurosurgeon because of some bulging disks… Saw him on August 10th and he said the bulges would not cause my problems… He sent me to a neurologist (the one I have now)… On the 18th the neuro wanted more MRIs on the upper part of my spine which had not been done… On August 23rd and 24th after finding nothing in the new MRIs, he began doing the EMG, etc. tests…and gave me the diagnosis of CIDP… We returned on the 31st having been armed with a website (now defunct) about a CIDP…

It’s amazing how long all of this took… I was beside myself with the thought that no one could figure out what it was… It was just such a relief to learn that it had a name and I was amazed at all symptoms which matched mine… Back while I was trying to let the muscle relaxers and the steroids work and trying not to worry because I was having trouble walking, I searched the net over and over for “pins and needles, weakness, muscle pain” etc…hoping that I could figure out what it was… I know I came across GBS but knew that that was too severe and not what I had at all… If I read about CIDP back then, I didn’t remember it… :)

Best of luck in figuring out what you have...

Aimee

What is CIDP? I'm just wondering what the initials stand for because I'm really foggy. :)

fanfaire
:cool:

Cidp=
 

"Chronic Inflammatory Demyelinating Polyneuropathy"--as a clinical entity, an autoimmune, subacute or chronic onset neuropathy with primary attack on the myelin sheathing of nerve fibers. Often follows a relapsing/remitting pattern, and often considered to be the longer-term version of Guillain Barre syndrome.

Take a look at this site:

http://www.neuro.wustl.edu/neuromusc...mdem.html#cidp

And I'm still trying to get over the fact that my husband, who has been diagnosed with CIDP and gets IVIG, well his mother had Guillian Barre when she was 53.

We told every single doctor we went to throughout the 15 year journey of Alan's PN about his mom having GB. Absolutely every doctor told us (including his present neuro), "oh, his PN can't have anything to do with his mom's Guillian Barre".

Oh really????

mel

Thanks very much for the link. Most informative. And helpful, as I have multiple autoimmune disorders and do not know specifically what is causing my neuropathy or even what type of neuropathy I have.

fanfaire
:cool:

CIDP AND small fiber
 

I think what you want to know, Rina, is if small fiber pn can be the same as CIDP.

I googled on the two phrases, which would be the way to find out, and nothing definitive came up right away, but if you've got time, that's how I'd look for that answer.

I think Glenntaj might know for sure, and there's a CIDP board on neurotalk, I believe.

I'm not exactly sure. I know that most people got that diagnosis because they had elevated protein in their spinal fluid on spinal tap, and that that's one reason the test is important.

Good luck,

Cidp
 

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

Thanks
 

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...

Rina--
 

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.

Idiopathic Periperhal neuropathy
 

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.

More questions
 

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--"approved" uses??
 

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. :)