NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)
-   -   New to this forum and I have PN (https://www.neurotalk.org/peripheral-neuropathy/172610-forum-pn.html)

echoes long ago 07-08-2012 10:12 PM

[QUOTE=Steven N;895718 Neuropathy is a symptom, and not an illness.
[/QUOTE]

Peripheral Neuropathy is damage to the peripheral nervous system. There are many causes ranging from diabetes, inherited, toxins, cancer etc. just as there are many causes of lung disease, heart disease, cancer etc. We dont say lung disease, heart disease or cancer is a sympton of smoking.
Peripheral Neuropathy is progressive in a substantial percentage of cases and markedly affects the quality of life of many of its sufferers, and is as much a disease as any of those other maladies.

Dr. Smith 07-09-2012 12:46 AM

Quote:

Originally Posted by echoes long ago (Post 895785)
We dont say lung disease, heart disease or cancer is a sympton of smoking.

We do say PN is, or can be, a symptom of diabetes, celiac, certain kinds/types of toxicities, and other conditions. I took that to be what Steven meant -- that it is not necessarily an end in itself, but a symptom of something else to look for as a cause, even if/when that cause is not yet known. We've discussed this here before; PN can be either/or both a condition and/or a symptom, depending on context. ;)

Doc

owlinor 07-12-2012 12:57 PM

Hello all
 
]Hi I have had neuropathy for 15 years and it has now progressed into charcot disease. I am at the point now where I have to live with it as there is no more can be done escept surgery which is not a good choice for me. I am however on medications that do help and it is livable. I am happy to chat and will try to answer questions, Thanks :)

mrsD 07-12-2012 01:23 PM

PN can be a primary disorder.... like Charcot Marie Tooth which is a genetic disorder. The damage arises as a primary causative factor. Poisoning, toxins, vaccines, are other primary types. Often with primary causes, they can be permanent, or we haven't found a way to deal with them yet. Dorsal root damage, is also an example of primary causation. There is rarely improvement, and treatments don't exist to help. Only symptomatic treatment is typically offered. Finding the toxin and removing it may help. But some toxins like thallium (heavy metal) have no cure.
Drugs toxic to nerves fall into this category.

PN can be a secondary disorder...arising from another disease process. Diabetes, hypothyroidism, gammonopathies like MGUS (bone marrow disorders), and autoimmune diseases like vasculitis, lupus, etc.
In secondary causes, treating the primary disease may lead to
a remission or improvement in the neuropathy, and damage may be arrested. Treating the primary disease successfully may arrest progression or even allow for some healing.

I thought I would just clarify that to help the newbies out.

Kitt 07-12-2012 01:53 PM

Quote:

Originally Posted by owlinor (Post 896857)
]Hi I have had neuropathy for 15 years and it has now progressed into charcot disease. I am at the point now where I have to live with it as there is no more can be done escept surgery which is not a good choice for me. I am however on medications that do help and it is livable. I am happy to chat and will try to answer questions, Thanks :)

Have you actually been diagnosed with Charcot-Marie-Tooth disease (CMT)? Just curious and if so how were you diagnosed?

Or do you mean Charcot's Foot which is not the same as CMT.

Thank you.

angel04 07-12-2012 01:55 PM

Quote:

Originally Posted by mrsD (Post 896865)
PN can be a primary disorder.... like Charcot Marie Tooth which is a genetic disorder. The damage arises as a primary causative factor. Poisoning, toxins, vaccines, are other primary types. Often with primary causes, they can be permanent, or we haven't found a way to deal with them yet. Dorsal root damage, is also an example of primary causation. There is rarely improvement, and treatments don't exist to help. Only symptomatic treatment is typically offered. Finding the toxin and removing it may help. But some toxins like thallium (heavy metal) have no cure.
Drugs toxic to nerves fall into this category.

PN can be a secondary disorder...arising from another disease process. Diabetes, hypothyroidism, gammonopathies like MGUS (bone marrow disorders), and autoimmune diseases like vasculitis, lupus, etc.
In secondary causes, treating the primary disease may lead to
a remission or improvement in the neuropathy, and damage may be arrested. Treating the primary disease successfully may arrest progression or even allow for some healing.

I thought I would just clarify that to help the newbies out.


The impression I got from other posts is that PN can improve with the help of supplements and various vitamins etc. I have no idea what type of PN I have, my GP told me I have all 3, auto, sensor and motor but I do not believe this. I know that they have not investigated me enough to say this to me. I have an appmt with my GP to ask for further investigation and also what excercise I can do and what supplements I can take. I also will insist that they diagnose the type of PN I do have and what can be done about it. I do admit that I know very little and am confused when I read responses like above. However it does help me to believe in my future and keep my spirits up. :)

Kitt 07-12-2012 01:57 PM

Quote:

Originally Posted by angel04 (Post 896878)
The impression I got from other posts is that PN can improve with the help of supplements and various vitamins etc. I have no idea what type of PN I have, my GP told me I have all 3, auto, sensor and motor but I do not believe this. I know that they have not investigated me enough to say this to me. I have an appmt with my GP to ask for further investigation and also what excercise I can do and what supplements I can take. I also will insist that they diagnose the type of PN I do have and what can be done about it. I do admit that I know very little and am confused when I read responses like above. However it does help me to believe in my future and keep my spirits up. :)

I think that you first must find out what type of PN you have. Because something like CMT has no cure/treatment at this time. There is no magic bullet for it. And I am not saying that you have CMT. Again the type of PN you have needs to be addressed.

angel04 07-12-2012 01:59 PM

Quote:

Originally Posted by Kitt (Post 896879)
I think that you first must find out what type of PN you have. Because something like CMT has no cure/treatment at this time. And I am not saying that you have CMT. Again the type of PN you have needs to be addressed.

I know you are right and I do not feel right in my skin yet, when I know the type of PN I have I am sure I will feel better and get help from the posts here. Thank you x :wink:

mrsD 07-12-2012 02:08 PM

Supplements like magnesium, B12 and Vit D can be tested for.

If a person is deficient, then they can be replaced and the PN will stop and/or improve. But this is one small aspect of PN.

The really difficult primary causes have no cures. The drugs, toxins, heavy metals, etc often leave a long term result.

So little is known about healing PN, that it is difficult to understand the process, and that is why doctors do not engage the subject at all.

Things like lipoic acid, work well for diabetics. It MIGHT work for some others, but impaired glucose utilization is the primary target. Acetyl Carnitine helps damaged mitochondria work better, and this is not a cure either, but may offer some symptom relief as long as it is taken. (HIV drugs, and other toxins may damage the mitochondria this way...but that is a theory). Benfotiamine works well for diabetics or those who have a genetic error in thiamine processing and utilization.

Malnutrition or malabsorption is not really a disease process, but more of a symptom. Once the person regains what is needed, the symptom (PN paresthesias etc) go away. It is difficult to know if a paresthesia is a symptom or a real nerve process. That is why all the testing is done. For example, anxiety and hyperventilation can give some dramatic numbness and tingling, just like damaged nerves behave. So there is a line of sorts, between paresthesia and PN...the word neuropathy means disease of nerves.
Poor circulation can damage nerves... like intermittent claudication (starved for oxygen). Fix the blood flow and the nerves return to normal functioning.

PN is very complicated... the supplements are only for some of the PNs, and not all. That is why we continually remind people that they have to become their own detective of sorts. The more details on your history, when it started, what was happening to you then, what food you eat, drugs you take, injuries you have, or extreme lifestyle like strenuous exercise or whatever, hobbies (solvents paints, etc) all play a factor in figuring it out. Sometimes this history is more useful than the fancy medical tests. And it can point to what you can do to try to improve your situation.

ginnie 07-12-2012 04:07 PM

Hi MrsD
 
Have you read the Book called "Silent Spring"? In it, there is alot about toxins. I have some auto immune problems. You mentioned thallium, a heavy metal. Mayo clinic had mentioned that to me in the 80's when I went there. I am starting to make sense of what has happened to me. I see a physiosist now to try to help my health. I feel like these problems are getting steadily worse. Taking B12 was first on this new doctors list for me. I want to stop this PN or RSD spreading, anything more I can do? I am not diagnosed yet, but was told no surgery to correct ankle because of it. thanks if you have any ideas. ginnie:hug:


All times are GMT -5. The time now is 08:45 AM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.