'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