Ok I Wanna Hear It lol

Kitt · 03-20-2015, 09:37 AM

Quote:

Originally Posted by Susanne C.

I'm at peace with the fact that this is incurable. It could be a lot worse, my kids are mostly all adults, the youngest is 16. This level of disability would have been a disaster 25 years ago with three under 4. There are no known effective treatments, but for type 1-A there are some promising medication combos being tried out in Europe that may prove effective.
That does sound like pinched nerves, when mine flare up, especially the elbows, it feels like that.
Pretty much every possible treatment has been discussed on this forum and pain management is all there is for many of us. Only IVIG is an actual treatment and that is for a small percentage of neuropathy patients. Symptoms can be ameliorated for some by supplements, diet, lifestyle changes, etc. but be very wary of anyone who claims to have a cure.

Suzanne, is this one of the articles you are posting about:

http://cmtjournal.org/first-human-tr...t-marie-tooth/

It has a long way to go as you can tell. Research takes years. Maybe some day there will be a cure/treatment for some types of CMT.

xrox · 03-20-2015, 10:11 AM

Quote:

Originally Posted by Kitt

Xrox, there is no stem cell treatment for CMT. Trials are being done. As I posted before, there are so very many types of CMT so it makes it difficult that way too. Symptoms vary greatly even within the same family. I am very familiar with CMT since it has been in the family from way back. Also, I have done much research on it and I keep up on the research from reputable sources.

No stem cell treatment for HNPP either.

Here is a site on HNPP.

http://hnpp.info/primer.html

Hope you find an answer.

The other site for HNPP that I posted earlier was written by a gal who has HNPP. She was at a support group meeting we had and she explained it well. She has it in it's later stages now where she is in a wheelchair and everything affects her greatly. She does not get better as HNPP usually does in the early stages. Her article is great.

Thanks for this. Does HNPP have a motor/weakness component early or can it be purely sensory in the first few years?

In reading more on HNPP it seems it would be atypical for both wirst and ankles to develop tunnel symptoms at the same time?

03-20-2015, 11:21 AM

Quote:

Originally Posted by UTGrad

Ok folks here's a question that has me baffled.

In the morning I have virtually no signs of neuropathy. It's like my life is normal again. By early afternoon the tingling starts. By early afternoon I've been standing, riding in a car, walking around, etc.

Does this pattern indicate anything? I'm wondering if it could be spine related.

Bump to my question from earlier lol

en bloc · 03-20-2015, 11:27 AM

Yes, it does sound spine related. The position in car may be compressing something. Do you have the same problem on the weekend or times when you are not in the car?

xrox · 03-20-2015, 11:45 AM

Quote:

Originally Posted by UTGrad

Bump to my question from earlier lol

As I said in my earlier post, if it was spinal "cord" related, it would be hard to explain why you are having symptoms all the way up to your face. Can you be more specific where the sensations are. Are they the face or the top/back of the head?

I did find this "Sometimes, in severe stenosis of the spinal canal there is direct pressure on the trigeminal nucleus, leading to facial tingling, numbness, or pain. "

03-20-2015, 12:31 PM

Left face cheek primarily...anywhere on left side of body. Some on the right but not often.

janieg · 03-20-2015, 12:36 PM

For what it's worth, I have a lot of facial tingling and weird sensations, and yes, they get worse as the day goes on.

My neck is a disaster with DJD and loss of mobility, but everyone insists my neuropathy is not coming from my neck. I know one particular nerve in my face is getting hit, though, as the weird sensation runs up through my right temple and follows my cheekbone under my eye. When I cracked my neck one time (which felt good afterwards), I got a shooting pain right along that nerve. Normally it's just a tingling sensation.

xrox · 03-20-2015, 12:47 PM

Quote:

Originally Posted by UTGrad

Left face cheek primarily...anywhere on left side of body. Some on the right but not often.

Given it is one sided and head to toe I would think that the neurologist would look at a Brain MRI first and then maybe a cervical MRI.

Here are a couple links to help with possible causes based on distribution and onset of symptoms...etc

https://www.dartmouth.edu/~dons/part_2/chapter_13.html
http://www.aafp.org/afp/2010/0401/p887.pdf

03-20-2015, 12:50 PM

Thank you great articles.

Kitt · 03-20-2015, 01:10 PM

Quote:

Originally Posted by xrox

Thanks for this. Does HNPP have a motor/weakness component early or can it be purely sensory in the first few years?

In reading more on HNPP it seems it would be atypical for both wirst and ankles to develop tunnel symptoms at the same time?

Early on transient periods of weakness or sensory loss is what I read. And it seems to be that wrist and ankles can develop tunnel symptoms at the same time. There also are different types of HNPP. It's on the site I gave earlier.

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