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Old 06-19-2020, 07:24 AM #1
ecb1171 ecb1171 is offline
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Default New Member Terrified Of Small Fiber Neuropathy

Hello,

I'm a new member (48/m) and I'm concerned I may have small fiber neuropathy. For that past year I've had sensations that started in the backs of my calved and inner thighs by my knees. It then spread to burning sensations in the forearms and (occasionally) my back (usually my neck) Very occasionally, I'll get some tingling in my toes. Also, I occasionally get muscle twitching (mostly in my legs)

Throughout this process I've learned that I am a hypochondriac. When I first felt the sensations, I hit Dr Google and became convinced I had MS. Ended up going to 2 neurologists who found nothing wrong from a neurological exam and also had imaging of my brain and entire spine; the results were all negative with the exception of some significant spinal stenosis in cervical and lumbar spins and a moderate bulging disk in my lower back.

I've also had a EMG and nerve conductivity tests on my legs and arms and the only thing that showed up was nerve damage in my hands from carpel tunnel.

To rule out autoimmune, I've had ANA and RPR tests (both negative) Also, no B-12 deficiency and no diabetes (or pre diabetes)

I was pretty much resigned to the fact that my symptoms were a combination of back and anxiety as my anxiety has been in overdrive for a year while I've had these symptoms. I had a chat with a doctor who assured me (once again) that I didn't have MS but indicated that small fiber neuropathy was a possibility. He threw that out there to relieve me as he indicated it was not a serious condition, did not cause deterioration and could be managed by medication.

Of course, I did my own research (hypochondriacs are fantastic in doing medical research) and found that small fiber neuropathy was way more debilitating than he indicated. So that has terrified me.

I am going to see a neurologist (again) and push for a punch biopsy but, in the interim, I've got a few questions:

1) Do my symptoms seem to be typical of small fiber neuropathy ? I know that anxiety can cause these exact symptoms.

2) How often does small fiber neuropathy progress ? My symptoms right now are easily manageable without any medication. It's the possibility of degeneration that terrifies me.

Thanks so much in advance for any information provided !
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Old 06-19-2020, 01:45 PM #2
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I've talked about what helps my neuropathy issues from hip replacement surgery....and have never gone to doctors for all their tests....what for, their drugs? There is a LOT of info in this forum to help ourselves.

I just got 2 more bottles of Inosine which helps me a lot....and I've talked about it here. Welcome....
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Old 06-19-2020, 04:01 PM #3
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Hi ecb1171

Welcome to NeuroTalk .

It sounds to me that the neurologists you have seen have done a good job of ruling out various possibilities.

The general information in this link may help you.

Small fiber neuropathy: Symptoms, treatment, and causes

There is a lot of information on the Web, not all of which is reliable. One reliable source is PubMed (there is a link to it in the "Quick Links" menu on all NeuroTalk pages.) PubMed contains about 30 million citations of the biomedical literature.

When I searched PubMed for "small fiber neuropathy inosine" I got no results. This suggests that there is no reported evidence that inosine is of any benefit in treating small fiber neuropathy.

Best wishes.
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Old 06-19-2020, 04:17 PM #4
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I appreciate the input !

The most likely cause my doctors have come up with is anxiety. That does make sense in a way as I and a hypochondriac. I have noticed that symptoms more consistent with small fiber neuropathy have started (sensations in the palms of my hands) or increased (buzzing in the bottoms of my feet) since I started researching small fiber neuropathy. It's possible the disease is progressing, but that seems a little coincidental.

I've got an appointment with a neurologist in a month and, hopefully, the skin biopsy soon after.

I've been seeing a therapist for about a year (since these sensations started) and I think I'm going to start on anti anxiety medication. If that offers relief, at least I'll have greater assurance that this mostly caused by anxiety.

If it is not anxiety, it's going to be a struggle not to let my anxiety take over and become convinced that I'll have to quit work and be bed ridden in a year, but I'll cross that bridge when I come to it.

It is good to see stories of people managing small fiber neuropathy as that certainly gives some hope !
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Old 06-19-2020, 05:13 PM #5
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I got the info on the Inosine and neuropathy from ND's who work at our homeopathic pharmacy in our town...they sell everything and do consults for FREE. Many people know a lot that is not on the net.
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Old 06-19-2020, 08:34 PM #6
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OP: Here are some otc "calming" supplements..

Inositol
L Theanine
Gaba
Magnesium

Meditation work and it's so FREE free free...all it takes is a will to do it. I've been working with meditation since the 70's when TM was first introduced in the U.S. It's amazing stuff and it's very very sad so many suffer needlessly ... One can do a Silent Meditation and that takes no thinking or anything, just get silent maybe a couple times a day 15 minutes or so each.....

To just start taking drugs is not the answer.
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Old 06-21-2020, 05:12 PM #7
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I have been suffering from Peripheral Neuropathy for the past year. I had NO HOPE whatsoever. I was/am in severe pain and have loaded up on supplements. The only thing which worked is Electro-Acupuncture with Vitamin B12 shots.
If you have not tried it and in serious pain, you owe it to yourself, your nerves which have been dying out to regenerate your own using your own!
Honestly folks (I don't get anything from anyone!), I was very skeptical about Eastern medicine in general. The key is finding someone who IS interested in your condition or have been trained on it Before you see them.
Along with Supplements, Electro-Acupuncture has given me a new lease on life. One of the supplements which I found to help a lot is from ** . Check them out.
Best of luck mate,

Last edited by Chemar; 06-22-2020 at 08:43 AM. Reason: NT guidelines
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Old 07-12-2020, 02:47 PM #8
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ecb1171

When I read your post, it sounds like I could have written it. I’ve had the EMG and the punch biopsy. I was then diagnosed with post viral syndrome. The antiviral drug seemed to work until I got the flu again (twice in one year) This time, the drug didn’t help.

I urge you get the biopsy. There is a ton of information on this forum. I’m sure you can find what you are looking for. I can totally sympathize with what you are going through.

Ironically, a friend of mine just hinted that my pain might be all in my head. I can assure you that the pain is real . Just because the doctors don’t have a tool to diagnose a condition doesn’t mean that it is not real.
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