[Susanne C.]

In the process of trying to become my own detective, as Mrs. D. advocates, and in addition to using my body as a chemistry set and possibly suspecting whatever virus is causing swollen glands and a fever blister as a culprit in causing the burning skin sensation which is now mercifully less acute but still with me, I thought of something else. (apologies for the run-on sentence)

I am prone to pressure palsies. I have pinched nerves at all my joints, so much do that the neurologist at Hopkins was pretty sure it was HNPP, but tests for same came back negative. My SFN is severe and long established. (skin biopsy)
Final diagnosis probable CMT type 2.

I teach high school this year. Mistake, but interesting and almost done. This means that I spend four hours straight every morning standing up and leaning my thighs against a stool. The burning started in this very spot, spread to the hips and front of my legs, and then to the shoulders and upper arms.

There are other factors which I am trying to eliminate, but my question is this- can a compression neuropathy in one spot evoke a sympathetic response in a mirror image fashion in a part of the body not subject to compression?

Any thoughts would be most welcome. Thank you.

[mrsD]

This is a possible question for the RSD forum, I think.

They have "sympathetic" spread, and mirror pain, has been discussed there.

This is a beginning article on mirror neurons:
http://en.wikipedia.org/wiki/Mirror_neuron

I don't think it is definitive yet, but spread of pain in RSD which is a form of neuropathy, is thought to be centrally located in the brain, by some researchers.
Also there are studies now showing Vit C can block the development of RSD...when surgery or trauma happens to ankles and wrists (ankle injuries are common first sites of pain for RSD patients).

Whether it is a "chemical" spread of inflammation, or a CNS brain change in pain perception, or both in some way, is still not understood.

RSD neuropathy seems to be a circulation problem. In early stages use of calcium channel blockers helps, which dilate blood vessels. There are papers on nifedipine for example. Also RSDers hate ice treatments and claim it makes the pain worse. They use heat much more than PNers do. Most of the PNers like ice or cooler temperatures, or cold water soaks, for example. So while they are both "neuropathies" the actual mechanism of causing the nerve pain seems to differ quite a bit.

[Kitt]

Originally Posted by Susanne C.

In the process of trying to become my own detective, as Mrs. D. advocates, and in addition to using my body as a chemistry set and possibly suspecting whatever virus is causing swollen glands and a fever blister as a culprit in causing the burning skin sensation which is now mercifully less acute but still with me, I thought of something else. (apologies for the run-on sentence)

I am prone to pressure palsies. I have pinched nerves at all my joints, so much do that the neurologist at Hopkins was pretty sure it was HNPP, but tests for same came back negative. My SFN is severe and long established. (skin biopsy)
Final diagnosis probable CMT type 2.

I teach high school this year. Mistake, but interesting and almost done. This means that I spend four hours straight every morning standing up and leaning my thighs against a stool. The burning started in this very spot, spread to the hips and front of my legs, and then to the shoulders and upper arms.

There are other factors which I am trying to eliminate, but my question is this- can a compression neuropathy in one spot evoke a sympathetic response in a mirror image fashion in a part of the body not subject to compression?

Any thoughts would be most welcome. Thank you.

Interesting. Heredity Neuropathy with Liability to Pressure Palsies (HNPP) is a deletion and CMT 1A is a duplication. This site can give you lots of information explaining how this is, how to test for it, etc.

http://www.hnpp.org/

It isn't current but it is well written and the person knows her stuff. She has HNPP I have seen her at one of our support group meetings.

Hope this helps. Also standing for four hours isn't helping either. Maybe you can sit at times. JMO

[Susanne C.]

Originally Posted by Kitt

Interesting. Heredity Neuropathy with Liability to Pressure Palsies (HNPP) is a deletion and CMT 1A is a duplication. This site can give you lots of information explaining how this is, how to test for it, etc.

http://www.hnpp.org/

It isn't current but it is well written and the person knows her stuff. She has HNPP I have seen her at one of our support group meetings.

Hope this helps. Also standing for four hours isn't helping either. Maybe you can sit at times. JMO

Thank you both. I had the Athena test for HNPP, but it was negative. I have the pinched nerves in addition to the axonal CMT. I declined further testing "would you like a spinal tap?" were among the Hopkins neurologist's last words to me. How many people would like a spinal tap?
He said further testing would be largely pointless as there is no treatment, unless I really wanted it. Personally I could care less if I am CMT 2 ABC or D. His very last words were "goodbye and good luck" and he meant it very sincerely.

Now that my son had definite symptoms, he would like to know which variant it is, but I hate going to doctors, and there are still many that don't have tests. Also our insurance has changed, so I missed my chance to do it for free. If I meet my deductible next year I might go.

I lecture throughout class and a chair would not work, but I only have a few days left.

[Kitt]

I'm with you. I could care less what the sub type is as there is no cure/treatment for any type of CMT.

If indeed your son has CMT he would have the same type as you.

I would never have a spinal tap either. No need for all that IMO.

Thank you for your post.

[echoes long ago]

i had a spinal tap done. it really wasnt bad at all, as long as you lay down afterward. if its not applicable to your cause or symptoms then of course dont do it, but if it would help you get an answer or is called for in order to obtain a diagnosis dont hesitate.