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

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

'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!

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

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

"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

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,