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Old 08-10-2019, 05:42 AM   #1
Joe2324
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Default Idiopathic or keep looking?

I am desperate for help. Right before I turned 40 I started experiencing all kinds of Neurological sx. First started with an overactive bladder (which at the time was attributed to prostatitis), then six months later symmetrical hands and feet started experiencing pins and needles, muscle twitches, nerve pain.... fast forward its been 3 years since then and I've done all kinds of tests but still don't have answers and my neuropathy has gotten progressively worse.

Current neurologist has put me on Lyrica 75mg 3x daily, which hasn't helped much and seems to have given up looking for a cause and is content leaving me in pain. Primary Doc thinks its "anxiety," ... or some sort of psychosomatic response which is complete BS to me..

What do I do.. I have no answers, should I push for further testing? Is there anything I can do to alleviate this pain?

Tests done in the past 3years: Full blood panel - all clear. CT scan of bladder shows nothing. MRI twice of head and full spine with contrast showed no lesions for MS. Full Rhum panel -- all clear to rule out obvious autoimmune stuff like lupus, vitamin deficiencies. Diabetes also ruled out. Neurologist suspect small fiber neuropathy and did skin biopsies that also came back normal. EMG's also normal. Gene test to look for some known hereditary neuropathy genes.. also normal. Full kidney workup - also normal.

I haven't tried: Lumbar Puncture, infectious diseases, naturopaths/, heart issues, taking out my teeth that has a gold filling/ root canals (anyone see that Netflix special on teeth will know why i'm kind paranoid about this).

Forgot to mention that prior to all this I was on Ambien (Zolpidem - 10mg nightly) for almost 8.5years taken as directed. If anything, I would suspect that the medications gave me neuropathy, but no doctor seems to believe this and I've been off the meds for 3 years and things have just gotten worse - in addition I find little stories out there of ambien and neuropathy.. but i'm throwing it out there cuz my gut tends to lean in that direction. One neurologist i saw thought the meds could've been masking a condition that was brought out once i quit them.. but he admitted he was just guessing.

I've seen 4 different neurologists, rheumatologists, nephrologist, 3 GP's, a psychiatrist, acupuncturist, etc... NO ANSWERS NO HELP.

Any suggestions would greatly be appreciated. Both in chasing down a cause (for me this is important cuz if there's any potential to address the cause there could be a chance to slow progression), and/ or alleviating symptoms.

On top of it now I'm battling depression as a result of this disease (not before it) as I worry about how I'll be able to take care of my daughter who is only 5 if I can't work much longer/ end up disabled. Things have progressed from annoying sensations to severe pain quite fast. No one seems to understand what's going on and I feel incredibly alone in all this.
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Old 08-10-2019, 11:47 AM   #2
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Primary Doc thinks its "anxiety," ... or some sort of psychosomatic response which is complete BS to me..
As much as you think it's "BS" it can be very possible. The only way to prove if your symptoms are due to Conversion Disorder(CD)/Functional Neurological Disorder(FND) is to see a Psychiatrist to find what medication(s) may help and a Psychotherapist for Cognitive Behavioral Therapy (CBT).

Unfortunately, for many, CD/FND can cause many types of symptoms including Neurological type symptoms.

Information about CD/FND:

Welcome - neurosymptoms.org

HOME FND Hope - FND Hope

I know someone who has FND and before accepting her problems as such, hundreds of thousands of dollars were spent on finding a "real" answer. She also went out of state to The Mayo Clinic and Cleveland Clinic to find what was causing her symptoms.

I re-read your past posts and it appears you experienced more symptoms after reading about MS. This would be an indication anxiety, CD/FND would be causing your symptoms.

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First started with an overactive bladder (which at the time was attributed to prostatitis)
Even as early as 40 you can start to have prostrate problems. It would be wise to take this issue very seriously. Te older you get the more issues that can arise.
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Old 08-10-2019, 06:56 PM   #3
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Thanks for the replay Snoopy
I did see a psychiatrist and a therapist to rule out some sort of conversion disorder in my mind. Unfortunately, neither seemed to help.. only suggesting "well it could be" then " well what does your doctor say" and then prescribing Lexapro, which i took for several months before quitting. Talk therapy for months went no where.

I will try another psych just in case, but like I said, I highly doubt its some sort of conversion disorder - which to me is even more rare than peripheral neuropathy. And if it were some conversion disorder I don't see how it would slowly progress in typical stock and glove presentation, get worse slowly over time, and not respond to pain meds/ psych meds.

As for MS: when my sx first started happening (tingling in feet) I naturally started reading about MS and yes, sx did progress after that.. but i think it was just the timing.. sx onset, read about the sx, then progression... I don't think by reading about the disease I somehow converted it to some physical process.
My research has shown me that many MS patients sometimes have to wait years before diagnosis and sx can long precede imaging... so while Im not officially "diagnosed" by a neurologist .. i did have one GP tell me that she thought it was early stage MS just not showing on MRI's yet... so I haven't ruled that possibility completely out for now.

My urologist says he doesn't see anything on my imaging with respect to the prostate and frequent urination, which leads me to believe it is in fact neurological. From what I've read many peripheral neuropathy patients suffer from an overactive bladder.

I have applied to Mayo clinic but don't know if they'll see me or when. Meanwhile all I have is lyrica.

I've joined a facebook group with other peripheral neuropathy patients, and many of them were given the idiopathic label.. they seem to have accepted it and given up on any hope of slowing progression/ addressing a cause. I fear I may end up in the same boat.

For some reason this forum seems to be less active than I'd hoped, with some correspondence taking months/ years to transpire, so I'm thankful for any response. If anyone knows of other forums/ groups where I might get more feedback/ help I'd appreciate that too. I figure all I can do right now is start to crowdsource help and chase down leads I may not have considered... that or wait till my sx really are severe before doctors want to do anything more.

Regardless - thanks for the reply.
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Old 08-14-2019, 01:19 PM   #4
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Thanks for the replay Snoopy
I did see a psychiatrist and a therapist to rule out some sort of conversion disorder in my mind. Unfortunately, neither seemed to help.. only suggesting "well it could be" then " well what does your doctor say" and then prescribing Lexapro, which i took for several months before quitting. Talk therapy for months went no where.

I will try another psych just in case, but like I said, I highly doubt its some sort of conversion disorder - which to me is even more rare than peripheral neuropathy. And if it were some conversion disorder I don't see how it would slowly progress in typical stock and glove presentation, get worse slowly over time, and not respond to pain meds/ psych meds.

As for MS: when my sx first started happening (tingling in feet) I naturally started reading about MS and yes, sx did progress after that.. but i think it was just the timing.. sx onset, read about the sx, then progression... I don't think by reading about the disease I somehow converted it to some physical process.
My research has shown me that many MS patients sometimes have to wait years before diagnosis and sx can long precede imaging... so while Im not officially "diagnosed" by a neurologist .. i did have one GP tell me that she thought it was early stage MS just not showing on MRI's yet... so I haven't ruled that possibility completely out for now.

My urologist says he doesn't see anything on my imaging with respect to the prostate and frequent urination, which leads me to believe it is in fact neurological. From what I've read many peripheral neuropathy patients suffer from an overactive bladder.

I have applied to Mayo clinic but don't know if they'll see me or when. Meanwhile all I have is lyrica.

I've joined a facebook group with other peripheral neuropathy patients, and many of them were given the idiopathic label.. they seem to have accepted it and given up on any hope of slowing progression/ addressing a cause. I fear I may end up in the same boat.

For some reason this forum seems to be less active than I'd hoped, with some correspondence taking months/ years to transpire, so I'm thankful for any response. If anyone knows of other forums/ groups where I might get more feedback/ help I'd appreciate that too. I figure all I can do right now is start to crowdsource help and chase down leads I may not have considered... that or wait till my sx really are severe before doctors want to do anything more.

Regardless - thanks for the reply.
Joe,

You need a true medical detective to help you out on this. First, you need to figure out if it is neuropathy or MS. Honestly, I would go with the neurologist's opinion on this. It seems like you have classic glove and stocking issues with neuropathy ( hands and feet ). MS is a possbility but it tends to manifest itself in episodes more so than a grinding progression of the symptoms getting worse. As for a conversion episode, neuropathy is actually much more common than someone having a psychological episode manifesting itself in the way you describe.

As for the skin punch biopsy, I would be very curious if "normal" just means that the Intraepidural Nerve Fiber number had not hit an abnormal value. If that is the case, then there could be other findings like nerve fragmentation or swellings that could indicate a neuropathic process. It might be very interesting to see the actual text of the report.

If you want next steps, I think that you have a already done the first thing I would suggest which is to go to a research center like the Cleveland Clinic, Mayo Clinic, or Johns Hopkins. You will have a better chance of finding your medical detective at one of these organizations. Second, you should get a hard copy of all of your test results and cross check with the medical literature to see if anything stands out. 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. Finally, there is some hope on the horizon in the form of pirenzepine ( for nerve regeneration ) and VX-150 (for neuropathic pain). You can Google them to feel a bit better about the future. Good Luck.
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Old 08-15-2019, 09:31 AM   #5
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so while Im not officially "diagnosed" by a neurologist .. i did have one GP tell me that she thought it was early stage MS just not showing on MRI's yet... so I haven't ruled that possibility completely out for now.
I have had a diagnosis of MS for 35 years with symptoms starting before the age of 18. In my personal experience, PCPs do not understand Multiple Sclerosis or the diagnostic criteria, though many think they do. Personally I would not put much into a PCPs comment about having MS. At this time you do not have any testing which points to MS. Did the Neurologists tell you how your Neurological exam/evaluation came out, any deficits?

Yes, sometimes, for some, it can take years for a diagnosis of MS, but many that believe they have MS end up not having it or have something else.

There is no symptom exclusive to MS, many conditions, vitamin/mineral deficiencies, some medications and mental health issues can cause similar symptoms.

Quote:
I don't think by reading about the disease I somehow converted it to some physical process.
Yes, it can and does happen.

I do hope you find answers for your symptoms/PN.
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Old 08-17-2019, 12:20 AM   #6
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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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Old 08-17-2019, 12:29 AM   #7
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Thanks Snoopy again for your time.

Yes you are right that people can read sx and then develop some sort of functional neurological condition afterwards -- but I'm not sure if that's me. My sx seem to fit some sort of progressive neuropathic disease process like MH suggested.. but I have not ruled it out completely either and am open to the possibility. Thanks for the links btw.

As for MS - I appreciate your input on that as well. I know it can be a very difficult disease to diagnose but I appreciate the feedback from those who have have a better understanding of the illness and have a better feel for what I should be looking for and the type of questions to ask doctors in order to get a diagnosis/ even if it is just to exclude one possibility.

I will continue to search... but I'm just trying not to lose hope. I've read so many people on Facebook who were simply told their condition was IDIOPATHIC and doctors just move on and leave them largely untreated.

While I realize there may be no cure/ better treatment.. just not knowing that is going on or even if there is a possibility of a better course of action is killing me.

Thanks again.
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Old 08-17-2019, 12:53 PM   #8
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Thanks Snoopy again for your time.

Yes you are right that people can read sx and then develop some sort of functional neurological condition afterwards -- but I'm not sure if that's me. My sx seem to fit some sort of progressive neuropathic disease process like MH suggested.. but I have not ruled it out completely either and am open to the possibility. Thanks for the links btw.

As for MS - I appreciate your input on that as well. I know it can be a very difficult disease to diagnose but I appreciate the feedback from those who have have a better understanding of the illness and have a better feel for what I should be looking for and the type of questions to ask doctors in order to get a diagnosis/ even if it is just to exclude one possibility.

I will continue to search... but I'm just trying not to lose hope. I've read so many people on Facebook who were simply told their condition was IDIOPATHIC and doctors just move on and leave them largely untreated.

While I realize there may be no cure/ better treatment.. just not knowing that is going on or even if there is a possibility of a better course of action is killing me.

Thanks again.
An idiopathic diagnosis is a very difficult thing to deal with emotionally. It would be great to have a neurologist and the medical community say "this is what you have, this is why it happened, this is what your prognosis is like, this is what we can do for you." Without that, we are left with an uncertain prognosis, no understanding of the underlying condition that might manifest itself in other ways, and no effective treatment.

I do think that there is some hope out there. The research field is identifying new causes of neuropathy (autoantibodies/autoimmune SFN, deoxysphingolipids, etc.), new treatments for nerve regeneration ( muscarinic antagonists), and better neuropathic pain treatments ( sodium channel blockers). I think that the new treatments in the pipeline will help transform the dumpster fire that is neurological treatment for small fiber neuropathy to something better. It will take time though. I don't believe though that your average Joe Blow Neurologist is going to be able to help much until new knowledge and new modalities of treatment are distributed. As you have found out, they have been taught that if the neuropathy is not one of these 8 things that can be treated, further testing is not worth it because nothing can be done but manage pain ( often ineffectively).
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Old 08-17-2019, 03:30 PM   #9
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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?
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.
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Old 08-18-2019, 01:46 AM   #10
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Wow thanks for all the links and info MH - there's definitely a lot to digest there and I plan to read all of it and prob order the genetic test also. I just can't accept that there's no explanation/ no diagnosis/ no real treatment. Keep me posted on your treatment/ progress. I am definitely interested!
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