So, I went and had my Nerve Conduction Study earlier this week, and I send a note to my Dr via email:
I came in and had my Nerve Conduction Study today.
Dr. P. said I was still in the "Normal" range, but the results showed a decline since the last test.
What now? My hands and face still tingle.
The Topamax decreases the pain at night so I can sleep comfortably.
I can work and maintain an acceptable level of competence on the Topamax, however the pain level is still at a 3-5 during the day. I can not tolerate being on my feet for more than 5 minutes at a time. I can not walk any distance or exercise in a standing position for more than 5 minutes and tolerate the pain.
I am currently taking 200MG Topamax at 9pm and 100MG at 9am, 100MG at 3pm. By 2pm, the level of pain in my feet is to the point that I only get up to go to the bathroom. My quality of life has decreased incredibly and I am very frustrated with this disease. If my nerve conduction study says I am in the "normal" level, where is all this pain coming from?This is his response:
A nerve conduction study is useful for ruling out many things, but can still appear normal in a patient with pain symptoms. If you feel that the current medication is helpful to some degree, we can make some adjustments to your treatment regimen. Our chronic pain management program here may be a useful resource on strategies to cope with these troubling symptoms. How do you feel?
Dr. L

I don't know about you, but I get the feeling that maybe he isn't really "hearing" what I'm saying!

Hey! At least you got a response? While he's covered himself, it's out there that he IS recognizing you have real pain issues.

Maybe a second opinion or a pain doc referral could help you w/the diagnosis and/or treatments. You'd be surprised at what a fresh pair of eyes [w/a brain behind them] can do for a body.

Med-wise tho this doc seems to be taking the 'old standby' approach first...I've done that route and I believe others have as well. Part of it is their habit, training, and how open and alert he is to what else is happening/progressing in treatments. It's a long and slippery slope that many of us have flomped around before. Your way of flomping is probably very different from mine tho, as we each have different limits in terms of docs, access to good research hospitals, and insurance [if any] limits. I know I have DEFINITELY flomped in some truly amazingly graceless ways!

Soo which 'Ghostbuster' are you going to call?

Good thoughts thru it all in the meantime! - j

I think you got a really nice note back from him. He acknowledged that you don't have to have abnormal conduction studies to have neuropathy, and that even with normal tests you can have significant pain. If you like the Topamax, he'll work with you with it; on the other hand, he thinks you'd be better off, I think, with the pain group. And that is probably true, because Topamax would generally not be the first choice of a pain practice, from what I'm seeing here.

Sounds like a nice guy. Also, you should know that governmental privacy regulations, HIPPA, which you sign in every doctors office, direct doctors to NOT use email with their patients. So he went out on a limb with you. He could get into trouble for giving any medical advice whatsoever via email.

I don't think your to clear with what a Nerve conduction test is, it doesn't measure how much damage you have to your small nerves, the small nerves job is to let your brain know of how much heat, cold, and feeling vibration, they are feeling, thats all.
To test how small nerve damage there is they can hook you up with a couple of electrodes and do test to see your reaction to heat, cold & vibration.
If thats not enough then they can do a nerve biopsy or skin punch, then under special testing they can see how much damage, but this is usually a last measure, because it costs $$$$.
An EMG will measure the larger nerve damage,which some say it hurts but didn't worry me in the least, same as a Nerve Conduction test as i wrote back to your prior post which i don't think you seen because it wasn't answered at all, perhaps it depends on the amount of nerve damage to the individual or may even be the skill of the operator, i really don't know.

Seems like your pain is helped at night but you are in trouble during the day when you need good pain relief, perhaps they can alter the meds a bit and cover your pain during the day, i found 300 mg Tramadol Slow release x 2 - helped me a lot during the day and the night and best part it didn't make me feel dopey, or the druged up feeling you can get form certain drugs like Oxycontin, Neurotin etc, but of course you have to talk to your doctor about appropriate meds to help you through the day.
It also sounds like you have a good doc thats offering you good advise to adjust your meds to suit your needs.
I really do hope that you can find a lot more relief than your getting right now.
good luck
Brian

from your Doc, at least it seems so to me.

The neuro I saw for the first time last week did and examination and said "there is nothing wrong, I can find no evidence of there being anything your neuro responses are all normal"! So take heart, I agree with Dahlek your doc seems to understand that you have pain issues even if some test does show where or what the pain is.

My nerve conduction tests were normal too, and I have more tests to come and I fully expect that they will come back normal too. And I will then have to face a neuro whose first contact with me was to say I am just fine ---yeah right!!! Lets just say I am not expecting a follow up personal email from him!

and my neuro said that the pain I described plus the amount of meds necessary to keep the pain at a tolerable level were not reflected by the EMG results. He also said that he had no reason to dispute my description of the pain and the level of discomfort I was having and it indicated to him that there might be a small fiber issue. He arranged skin punch biopsies. The biopsy confirmed that I had significant small fiber problems.

--it is very possible to have major painful damage to the small fibers that subsume pain and temperature and still come out normal on nerve conduction studies, which only measure the larger, myelinated nerves. The technology is not yet there for those electrical studies to measure smaller nerves, so other measures would have to be taken, which might include quantitaive sensory testing, sudomotor axon reflex testing, and skin and/or nerve biopsy.

Many neuros are not familiar with small-fiber neuropathies, and start to look at you askance when you have neural pain symptoms but your standard tests are normal. I have given such doctors copies of the following two papers (both can be found in the Useful Sites):

http://www.thecni.org/reviews/13-2-p07-treihaft.htm

http://www.dcmsonline.org/jax-medici...uropathies.htm