Does neuropathy always show up on tests?
 

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?

I have had the crawling feeling too.......
 

[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?

[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?

No injury, I do spray chemicals in the garden but I use gloves.

Actually, the recurrence seems to be related to working out at the gym- although it seems strange, I know. I hadn't worked out at the gym much since my initial problems- I just walked in the neighborhood sometimes and did housework. One week, I walked on the treadmill 3 times a week for 30-45 minutes (I was walking quite fast, almost running). I was also doing weight training. Then the symptoms began and seem to be progressing.

There can be outgassing of chemicals from commerical places.

My husband now works at home, (for security reasons), but his job requires him to go to the office for meetings, and to turn in his cases, a couple times a month. He may go more often, or less depending on what is happening.

He says whenever he goes there he itches all over. Itchy and stinging. His building is new, and also shares facility with the entire computer network that is hubbed in our metro area for the gov't. I suspect he is getting exposed to either cleaning fumes, there, or outgassing from carpet and/or building materials. He has no PN symptoms or arthritis like I have, but he does get stiff now and then since he is over 60 now.

When you work in the garden with chemicals, some get inhaled even if you wear gloves.

I'd let up on the arm resistance work. You can do that walking outside with weights. If you stop the gym for a while, and feel better then that points to something there. Chemical or overuse from working out.

One has to be a detective these days. You can not expect or rely upon a doctor to find much with PN... there are just so many triggers! And the list is growing!

Interesting you bring up refinishing furniture Mrs. D. I had been staining furniture and not wearing gloves, 3 weeks before I began with my symptoms in August. I have asked several Dr.s about it and they all say no way that I got a toxic exposure from it,,,,but I do still wonder.

Solvents are defatting agents. They penetrate the skin by dissolving the protective layer of fats that protect you.
They get into nerves because nerves are predominately made of fat.

Here is an article with a table/list:
http://emedicine.medscape.com/article/1174981-overview

Also implicated are dry cleaning solvents, which may linger on clothing.

If that stuff can take off s finish on a piece of furniture,, imagine what its doing to exposed skin

Something I've been thinking a lot about lately - another environmental disease/health issue we (humans) may be bringing down upon ourselves...

I recently met with a second neurologist & more testing, but I've been hesitant to post anything until the test results were in. My follow-up to discuss them with neurologist isn't for another month, but my PCP is tied into the same computer, and happy to give me the results over the phone (hardcopies to follow).

Once again, due to my weight (secondary to intractible pain) diabetes was suspected. I explained that I'd been tested several times before, to which he replied that blood test screenings aren't accurate (wish I'd known that before) - so he ordered a glucose tolerance test. Negative again, as were the other blood tests, so I'm expecting another dx of idiopathic.

Having gone through the list during the initial visit, I'm pretty much left with suspected environmental exposures, but that may have been decades ago and the results surfacing only now. At least none of the places I've lived were built on chemical dumps, etc.

I'll probably never figure it out (and it likely wouldn't matter if I did) - another in a series of medical blindsides to cope with...

“There is no psychiatrist in the world like a puppy licking your face.”
— Ben Williams

arachoiditis
 

[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.

Gstein? Do take a peek into MMN?
 

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! :hug::hug:'s ! - j

This is very interesting.........
 

[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.