Quote:
Originally Posted by Joe2324
First, thank you for actually taking the time to read and address my issue MH - I'm super grateful for any attention people give to my situation.
- I tend to agree with you that it fit the description of sort of neuropathic process more than some sort of functional neurological disorder (though I can't rule that out completely either) since it def progressing in a sock and glove fashion. I've seen a few neurologists who seem somewhat uninterested in finding a cause and are content at just calling it "idiopathic" and treating it with lyrica/ gabapentin.. their rationale being that the treatment would be the same... but if it is something like you mentioned below than it makes sense that supplements/ etc could at least partially address the issue and slow progression maybe? I don't know.
Do you mind if I ask you you discovered your low serine levels as a cause? -- did you simply stumble across it on the internet? Did your tests come back with low serine levels (I don't know if I've even been tested for that - will check my bloodwork). Can you pass on any links/ articles that may address it?
"They are finding out interesting things like elevated folate levels or low serine levels are associated with neuropathy that weren't covered in medical school for these neurologists. I did just that and found that I had abnormally low serine levels that were likely contributing to the production of neurotoxic deoxysphingolipids. I now supplement with L-serine and use oxybutynin and have seen some positive changes in my neuropathy.
-How long after supplementing with L-Serine and oxybutynin did you experience any difference?
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Joe,
I was motivated to check my L-serine levels by a study that I read about Hereditary Sensory and Autonomic Neuropathy (HSAN). This neuropathy presents like a small fiber neuropathy so it got me interested. I ran across a term that i had never seen before: Deoxysphingolipid. I googled the term and it was pretty illuminating.
Researchers have found that these neurotoxic lipids induce mitochondrial dysfunction which has been strongly associated with small fiber neuropathy
(
Localization of 1-deoxysphingolipids to mitochondria induces mitochondrial dysfunction. - PubMed - NCBI)
Researchers have found highly elevated levels of these lipids in diabetic neuropathy, HSAN, paclitaxel neuropathy, neuropathy associated with mitochondrial disease and neuropathy associated with metabolic syndrome.
HSAN and paclitaxel neuropathy
(
Neurotoxic 1-deoxysphingolipids and paclitaxel-induced peripheral neuropathy)
diabetic neuropathy (
Lowering Plasma 1-Deoxysphingolipids Improves Neuropathy in Diabetic Rats | Diabetes)
All of these neuropathies had similar symptoms to mine (small fiber dysfunction) so I went to an online blood test site
Order Any Lab Test or Blood Tests Online | Walk-In Lab and ordered an Amino Acid Blood Test. I took the test and found that my L-serine levels were lower than normal. After doing some checking, I realized that the ratio that I had was similar to a person who had Diabetes.
Neurotoxic Deoxysphingolipids are produced by an imbalance in the L-serine to L-alanine ratio.
(
L-Serine Deficiency Elicits Intracellular Accumulation of Cytotoxic Deoxysphingolipids and Lipid Body Formation. - PubMed - NCBI)
L-Serine supplementation has been shown to help neuropathy
https://www.thieme-connect.com/produ...s-0034-1375013
I started to supplement to correct the ratio and I started tingling like crazy everywhere that I had neuropathy. Tingling can be a sign of nerve regeneration ( Tinel's sign ). I also noticed an increasing level of sensation in my feet, hands, and legs (touch and thermal). My finger tips also wrinkle more when exposed to water ( autonomic nerve fiber function). I also noticed less allodynia at my wrists. It took about week for the tingling to happen and a couple of months to notice some sensation differences.
In addition, I am using oxybutynin which is a M1R antagonist that has been shown to improve small nerve function:
https://diabetes.diabetesjournals.or...lement_1/58-OR
FYI, I tried to talk about this to a neurologist and he had no idea what the hell I was talking about. I showed him the studies but he never followed up and read them. Unfortunately, the idiopathic neuropathy patient is pretty much orphaned by the Neurology field. There is little money for research, big pharma is just interested in pain management drugs (gabapentin, Lyrica, VX-150) so they can make profits, and the technology to identify things like new autoantibodies and metabolic waste like deoxysphingolipids is just coming into it's own. The research by Winsantor for nerve regeneration though gives me hope as does the new generation of sodium channel drugs that will come onto the market.