Hi,
I am new to this site. I have a question. I started having crawling sensations in my arms in 2002. It got better. I had a NCV done then and it was normal. Doc at UAB said it was PN that didn't show up.

My symptoms started again in September 2010. Well the small fiber skin test is fairly new, right? I am being tested for that and will get the results in 2 weeks. The doc seems to think that if nothing shows up on that test, then I don't have neuropathy and nothing is really wrong with me. I've already had a recent NCV and it was normal. My current symptoms are crawling sensations all over, extreme sensitivity to touch, and occasional shooting pains.

Any thoughts?

[QUOTE=gardening1;721748]Hi,
I am new to this site. I have a question. I started having crawling sensations in my arms in 2002. It got better. I had a NCV done then and it was normal. Doc at UAB said it was PN that didn't show up.

My symptoms started again in September 2010. Well the small fiber skin test is fairly new, right? I am being tested for that and will get the results in 2 weeks. The doc seems to think that if nothing shows up on that test, then I don't have neuropathy and nothing is really wrong with me. I've already had a recent NCV and it was normal. My current symptoms are crawling sensations all over, extreme sensitivity to touch, and occasional shooting pains.



Mine also come and go. I do not have sensitivity to touch, but I know that is a PN symptom. My symptoms started in May 2009. I also had a negative small fiber skin test and NCV and EMG.
I believe it means no damage to nerves, but the sensations are real and my Doc. calls my Dx. Paresthesia, to me that is a symptom, not a dx., but that is the best he can give me with my neg. tests. I also believe as time goes on, damage may occur and retesting may be necessary. I don't think the result of damage is carved in stone, but it may occur. If one can find out the cause of the PN, we could prevent progression and damage. Mine appears to be idiopathic, no cause found, therefore no way to control outcome.

This is my "take" on all of this.

That is what he says is causing my symptoms so far too- paresthesia. It is interesting that my first neuro. called it idiopathic PN without tests supporting it (back in 2002) but my current one believes that a test must show it.


[QUOTE=invisable;721820]

Some Dr.'s will only diagnose it as neuropathy if there is a test to comfirm it. Mine are all in that boat. I have no diagnosis, but have the parasthesias all over with burning pain. How come so many of us have this and nobody can tell us what it is?

[QUOTE=invisable;721820]I have archoiditis. You might look up the symptoms for ARC. Good luck

Yep, I'm in this boat too.
Numbness for 3yrs in limbs, pain, muscle twitching, etc.
No idea how it started, it just did.
Tested for diabetes, and everything else.
After 3yrs of tests and a review of current and new symptoms each visit, I received a diagnosis of small fiber neuropathy in 2008. The Dr continued research, putting in new information as I experienced it. He'd give me a more refined diagnosis than the SFN. In the past year he stated I might have Lamberts Aeton, due to the amount of muscle pain. Still having pain, muscle and nerve. Still have the twitching all over. Since October of this year both arms feel tense, continually pulling muscles, etc. My Dr is looking into this, but still no diagnosis. He's one of the best Dr's in the area, at one of the best clinics in the region. There has been no shortage of research or tests on his part. But with Autoimmune conditions, the dern things are SO similar that it takes awhile for your body to put up a "flag" to show which direction the Dr needs to go next. I'm learning this, although I'm not fond of the pain, or the slowness of a sure diagnosis, but the most important thing is finding a Dr you can work with, that actually LISTENS to you. Each time I have a visit, we get closer to what I have. It's frustrating, especially the amount of pain(!) but eventually I'll get a diagnosis.

First, check out this site ...up in the 'stickies', then? This one:
http://neuromuscular.wustl.edu/antibody/motpn2.htm
Search and READ this site thoroughly, tho slowly [And, I mean the WHOLE site...every nook and corner!]. Trying to take in too much info at one sitting can turn your brain into peanut butter!
In the end? You will have a true respect for neuo docs who search for the causes of YOUR problems vs. those who don't. This site is pretty highly respected in the medical world so if any doc goes 'Pooh'? You know what to do about THAT doc? Tell him to go see this site or get a refresher.. [not really-best not to aggravate them.] but rather go seek a second or third opinion to back up your instincts followed by your research and TEST you properly.
Dr Smith? IF you show true Autoimmune issues? Believe me, many many 'other' docs will SAY you don't have them! No matter what the results are, unless BY IMPECCABLE SOURCES! My own tests Spinal fluids and blood workups [many] were done by VERY VERY respectable sources. CIDP it is, and when one opinion necessitated a 'consultation' by the head of a competing 'teaching hospital's' neuro head? That head #2 contested it at first-stating I had to be wheelchair bound before getting/benefiting from some treatments?, until I cited my research to that time about PN vs CIDP and well? Now, years later? That #2 neuro head has come around... #1 Neuro head got it right w/all the right tests that are 'Standard' Internationally now. Go to the site I referred to Gstein and READ IT! Go to the top quadrants about the testing and also all the other neuro issues one mite have! No doc can know all? Many have biases. Chose your doc well! One that will help you get better! IF not diagnosed and you do NOT persue diagnosis WHILE YOU ARE ABLE TO? It'll be too late -later.
Learn or not. To Complain w/o learning? Not for me.
Hugs and heart to all! 's ! - j

[QUOTE=tommyd;723891]What test did it actually take for them to determine this was your dx?

I definitely fit the bill with the bizarre neuro sensations, no motor problems though. I have herniated discs in neck and back seen on MRI, but this disease was never mentioned.

[crawling sensations in my arms in 2002]

Could your symptoms back then have been some sort of a work related injury? Like a repetitive motion injury - lots of desk work, static & forward head postures??

but now symptoms all all over your body??
Possibly...RSD?? if not PN?
Have you read on our RSD forum? Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)
http://neurotalk.psychcentral.com/forum21.html
(extreme sensitivity to touch etc}

Welcome to NeuroTalk:

Did you have a vaccine before the new relapse?

Do you spray chemicals in the garden? Did this start after using some chemical, stripping furniture, new carpeting etc?

Some sensations may be toxin related. Since you had a long interval between events, I wonder if you come into contact with something that triggered you?