Ideopathic Neuropathy - Doesn't all neuropathies have a cause?

Posted by cax75 @cax75, May 4 9:14pm

For about 20 years I have suffered with IPN in my feet - toes. It has come to my attention that all neuropathies have a cause and we will do better to treat the cause, not just the pain. I am allergic to the standard Gabopentin or Lyrica most often prescribed for the pain. How can we find out the cause of - in my case- the small fiber peripheral neuropathy?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@rnlorena

@cax75 In 2021 I was diagnosed with small nerve fibers neuropathy, Ideopathic and non length dependent. I went to a lab and they took 20 tubes of blood that day and found nothing. They checked a lot of things. Heavy metals was one. They checked me for auto immune diseases. When I researched this I thought to myself if I had an autoimmune disease I would know it. But after reading I discovered you can have an auto immune disease and not know it. I woke up two days after retiring from nursing and I had full onset of pin pricks head to toe and in my eyes. Going off constantly. After a two month wait I got to see a neurologist and The first question I asked was how many of your patients in your entire career wake up with full onset pin pricks. His response was none it’s rare. No one in my family had anything like this. I had two Covid shots in Jan. Of 2021 and I was in the 6 week time frame for having a reaction. It will be years before they come up with answers to that. Did they ever do BLOOD WORK on you? I also had the skin biopsy and it showed the small nerve fiber. I take alpha lipoic acid and it has helped me a lot. I still get them wherever they decide to go off on me. But not like 24-7 constantly anymore. It is sometimes difficult to find answers how well I know. I wish you luck. @rnlorena

Jump to this post

Be sure you’re not consuming any synthetic meds, supplements or beverages. Especially Synthetic B6 in vitamins beverages, coffee etc.

They can hide it in coffee if it’s less than 1%
they don’t list it on the ingredients

This could be why the Alpha Lipoic acid is working for you.
Research MTHFR
MUTATIONS .
You may have methylation issues/ issues detoxing if your Homozygous or Conpound Heterozygous.

I’m no expert but I had similar symptoms and this is where it lead me.

Always see a NATURALPATH vs a traditional md

REPLY
@sueinmn

@cax75 Idiopathic literally means "of unknown cause or origin". Of course, every disease or illness has a cause, but the real problem is that medicine and research are not advanced enough to determine the cause for every one of the thousands of conditions we know about. Then comes the realization that knowing the cause doesn't translate directly to knowing the treatment or the cure.

So what, as patients and practitioners do we do?
We look for known causes using our medical history, examination and testing. If the cause isn't identified, the condition is labeled "idiopathic ".
The practitioners use established protocols, based on best current knowledge and their experience, to try treatments, from most likely to more experimental ones, hoping one alleviates symptoms.
And all the while, in the background, medical research continues, looking for clues, causes and cures.
For example, I have had asthma for many years, most of that time it was poorly controlled because the side effects of the inhalers and nebulizer bothered me so much that I only used them when desperate. 3 years ago, a COPD drug was being tried for asthma, and that inhaler changed my life. They still can't cure asthma without a lung transplant, and they still don't know exactly what causes it, but I have my life back!

Have you found any treatment that helps your neuropathy?

Jump to this post

My primary doctor referred me to a neurologist. He says the problem is nerver related with no known cause. Quite a concidence (IMO) that a neurologist would assume its nerve related, even though he has no idea of the cause. I find that very frustrating because he has no interest in finding the cause beyond assuming a damaged nerve.
In my case, the pain trigger is certain types of foods. i.e foods with chile pepper (like most Mexican dishes), or black pepper, or any food that is acidic like tomato based sauces, or chocolate, or cinnamon, etc. etc. So could it be some rare type of allergy that I developed? I am asking my Primary that tomorrow morning. It just feels like all my doctors have zero interest in pursuing a cause.
To answer your question a bit more specifically, I do get some pain relief from progabalin (aka Lyrica) as long as I avoid all the "trigger" foods.

REPLY
@bgadams

My primary doctor referred me to a neurologist. He says the problem is nerver related with no known cause. Quite a concidence (IMO) that a neurologist would assume its nerve related, even though he has no idea of the cause. I find that very frustrating because he has no interest in finding the cause beyond assuming a damaged nerve.
In my case, the pain trigger is certain types of foods. i.e foods with chile pepper (like most Mexican dishes), or black pepper, or any food that is acidic like tomato based sauces, or chocolate, or cinnamon, etc. etc. So could it be some rare type of allergy that I developed? I am asking my Primary that tomorrow morning. It just feels like all my doctors have zero interest in pursuing a cause.
To answer your question a bit more specifically, I do get some pain relief from progabalin (aka Lyrica) as long as I avoid all the "trigger" foods.

Jump to this post

I wish I could say that my neuropathy was triggered by foods that I'd eaten, but most of us aren't that lucky. I have the pleasure of dealing with my pain 24/7 every single day. I've been taking the maximum dosage of gabapentin for years, along with ALA now, and the pain is only dulled, it's always there.
Just saying.

REPLY
@mrmacabre

I wish I could say that my neuropathy was triggered by foods that I'd eaten, but most of us aren't that lucky. I have the pleasure of dealing with my pain 24/7 every single day. I've been taking the maximum dosage of gabapentin for years, along with ALA now, and the pain is only dulled, it's always there.
Just saying.

Jump to this post

So sorry for the suffering you are having to go through. I fully understand that my problems are relatively minor compared to what many of the people posting here are going through. I can at least manage the pain through diet and pregabalin.

REPLY
@rnlorena

@cax75 In 2021 I was diagnosed with small nerve fibers neuropathy, Ideopathic and non length dependent. I went to a lab and they took 20 tubes of blood that day and found nothing. They checked a lot of things. Heavy metals was one. They checked me for auto immune diseases. When I researched this I thought to myself if I had an autoimmune disease I would know it. But after reading I discovered you can have an auto immune disease and not know it. I woke up two days after retiring from nursing and I had full onset of pin pricks head to toe and in my eyes. Going off constantly. After a two month wait I got to see a neurologist and The first question I asked was how many of your patients in your entire career wake up with full onset pin pricks. His response was none it’s rare. No one in my family had anything like this. I had two Covid shots in Jan. Of 2021 and I was in the 6 week time frame for having a reaction. It will be years before they come up with answers to that. Did they ever do BLOOD WORK on you? I also had the skin biopsy and it showed the small nerve fiber. I take alpha lipoic acid and it has helped me a lot. I still get them wherever they decide to go off on me. But not like 24-7 constantly anymore. It is sometimes difficult to find answers how well I know. I wish you luck. @rnlorena

Jump to this post

It’s great that we spend so much time worrying about the cause but the fact of the matter is once you got it, you can’t get rid of it. Underlying causes possibility. Let’s start with autoimmune diseases. I have vitiligo I am hypothyroid. didn’t have any symptoms of AN till right after my third Covid shot probably drank too much during Covid point being I don’t know where it came from. I’m not gonna dwell anymore. Basically any medical advice I’ve gotten has been totally ambiguous except the docs saying that I have autonomic neuropathy so bottom line I don’t know where it came from. I have some idea where it’s going, etc. etc. etc..

REPLY
@andyjustin

It’s great that we spend so much time worrying about the cause but the fact of the matter is once you got it, you can’t get rid of it. Underlying causes possibility. Let’s start with autoimmune diseases. I have vitiligo I am hypothyroid. didn’t have any symptoms of AN till right after my third Covid shot probably drank too much during Covid point being I don’t know where it came from. I’m not gonna dwell anymore. Basically any medical advice I’ve gotten has been totally ambiguous except the docs saying that I have autonomic neuropathy so bottom line I don’t know where it came from. I have some idea where it’s going, etc. etc. etc..

Jump to this post

@andyjustin one thing I learned is you can have an auto immune disease and not know it. That is weird but true. I had two Covid shots in Jan. 2021 because I worked in the hospital. The other is I wanted to protect my family and myself. March 2021 I retired. No one in my family had anything like this. I take the alpha lipoic acid for the pin pricks and boy it worked. I get them here and there. I get tired of hearing— we know you have it we just don’t know the cause. Not all but some Doctors just don’t know how to talk to patients. I have heard it first hand. As a retired nurse I am appalled at what I now see and hear from Doctors and the medical field. I am not sure where SNF is going because it’s weird. WE all have to be our own advocates. I am in that mode now. I asked for a referral to a neurosurgeon and have had to keep on it. When I talk to people I make myself clear. But I have found that some people aren’t really listening to what you say. I have seen that at least a few times this past week. So I have had to correct things. I saw my neurologist and asked if what is happening now is related to my small nerve fiber and he said no. I think it’s related to my neck issues. Hopefully I will find out soon.

REPLY

I was diagnosed with Small Fiber Neuropathy after developing numbness and tingling in feet and hands and random electric shocks through my body. The neurologist gave me this diagnosis and sent me on my way.

I dug in myself and after much research on neurological symptoms and trying to correlate with my medical condition of Microscopic Colitis, I suspected a B12 deficiency. On my own dime, I had a blood test performed at a vetted lab in California. The B12 in my blood was so low that they couldn't even read it! I then convinced my GP to get a retest at my clinics lab which would be covered by insurance because of my first test. He agreed and again, no B12!

I started with intramuscular injections of B12 first every other day, now once a week and we will eventually go to every 2 weeks. But in 9 months, 4 out of the 5 neuro symptoms I had (including electric shocks) are COMPLETELY gone and the neuropathy in my feet is approximately 50% better.

Now of course every single person is different. Just wanted to share my story and stress the importance of B12 to nerve health. If any doubt, please have your B (and D) levels tested! All the best!

REPLY
Please sign in or register to post a reply.