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Old 03-20-2015, 03:48 AM #31
Neuroproblem Neuroproblem is offline
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Originally Posted by UTGrad View Post
No family history of autoimmune that I'm aware of. My primary care doc possibly with some communique from the neuro believe it's an immune response possibly from an infection.
Most autoimmune are not heridatary, mostly environment. only a select few autoimmunes are known to be heriditary. excessive running, also can cause neuropathy, and can trigger autoimmune diseases as well.
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Old 03-20-2015, 04:54 AM #32
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Most autoimmune are not heridatary, mostly environment. only a select few autoimmunes are known to be heriditary. excessive running, also can cause neuropathy, and can trigger autoimmune diseases as well.

Do you have any links or medical claims to back up excessive running causes neuropathy and autoimmune diseases?
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Old 03-20-2015, 05:14 AM #33
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Default I would suspect--

--that if one is a hard-training athlete with neurological symptoms, and relatively young, the first thing to look at, barring any history of injury or other known systemic conditions, such as autoimmunity, hereditary neuropathies,or celiac, would be to look at the spinal cord.

Nerve root problems from spinal osteophyte compression can result in exactly the same symptoms as more systemic peripheral nerve conditions. Sometimes in such cases there is marked differences in symptoms when different positions are assumed or when exercising vs. not exercising, but not always.
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Old 03-20-2015, 06:49 AM #34
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I don't have any weakness or atrophy yet. When did you first notice the muscle weakness/atrophy as a symptom? Is there a chance the progression will slow/stop?
Do you have reason to believe that yours is a hereditary neuropathy? I do not want to worry you unnecessarily, my sitution is more severe than many, I had poor balance and coordination as a child, was never able to run well or without falling, and only learned to ride a bike with great difficulty. So the muscle weakness has always been present, as have the tight Achilles' tendons. The numbness began in my early 30's. The progression of CMT is highly variable but it always progresses. I have been on a fast track of deterioration lately, but I am 53.
This doesn't come on quickly as a rule, usually even if a diagnosis is made later in life you can see that the signs were there all along. Neuropathies that come up quickly are often the ones that can be halted or reversed if a cause can be found.
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Old 03-20-2015, 09:07 AM #35
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Originally Posted by Susanne C. View Post
Do you have reason to believe that yours is a hereditary neuropathy? I do not want to worry you unnecessarily, my sitution is more severe than many, I had poor balance and coordination as a child, was never able to run well or without falling, and only learned to ride a bike with great difficulty. So the muscle weakness has always been present, as have the tight Achilles' tendons. The numbness began in my early 30's. The progression of CMT is highly variable but it always progresses. I have been on a fast track of deterioration lately, but I am 53.
This doesn't come on quickly as a rule, usually even if a diagnosis is made later in life you can see that the signs were there all along. Neuropathies that come up quickly are often the ones that can be halted or reversed if a cause can be found.
No history in my family but the HNPP description is the only one I've read that fits my symptoms of widespread nerve sensitivity. If I lightly scratch my wrists or elbow or bicep I get tingling and electric shocks in my palms and fingers. Same goes for my feet and ankles.

I have a constant burning in both wrists and ankles as well.

Have you looked into stem cell treatment or is that just a scam? Claims sound a little fishy to me.
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Old 03-20-2015, 09:19 AM #36
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Originally Posted by UTGrad View Post
Do you have any links or medical claims to back up excessive running causes neuropathy and autoimmune diseases?
I am not a doctor but I have experience with severe spine issues.

There is no claims or evidence that I no of. There may be a link to running excessively and DDD (especially if there is a family history) but even that is not proven AFAIK.

As for nerve roots. There is no way that nerve root compression would cause widespread paresthesia like yours unless you had many multiple nerve roots compressed at the same time.

It is more likely that you would have central cord compression from a ruptured disc or bone spur. However, compression of the cord (myelopathy) would most always show a weakness along with sensory problems.

And since it is your face down to toes it would have to be cord compression very high up (C1-C2).

Other spine/brain problems that might cause your symptoms would be chiari malformation or syringomyelia.

You could do a self test for Hoffman and Babinski signs. A positive result might point toward a spine issue. A negative result does not rule it out.
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Old 03-20-2015, 09:19 AM #37
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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.
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Old 03-20-2015, 09:21 AM #38
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I'm an account executive that drives around in a car a lot everyday seeing clients. My tingling gets worse later in the day after spending time in the car.
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Old 03-20-2015, 09:24 AM #39
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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.
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Old 03-20-2015, 09:26 AM #40
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Quote:
Originally Posted by xrox View Post
No history in my family but the HNPP description is the only one I've read that fits my symptoms of widespread nerve sensitivity. If I lightly scratch my wrists or elbow or bicep I get tingling and electric shocks in my palms and fingers. Same goes for my feet and ankles.

I have a constant burning in both wrists and ankles as well.

Have you looked into stem cell treatment or is that just a scam? Claims sound a little fishy to me.
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.
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