1. < Neuropathy

My experience with Small Fiber Neuropathy

Posted by djroberts @djroberts, Oct 9, 2018

Hi there. Thank you to all the people who support this forum.

I believe I have Small Fiber Neuropathy. It's been a struggle to get doctors to believe something is wrong. I have one now that believes me but believes but this seems to be all new information for her. I met with neurologists and they said I was fine. I passed all their normal tests and they seem to imply it was psychological. I'm still trying to get tested and get an official diagnosis. It's possible I'm wrong but given the symptoms I have it seems unlikely.

I was a drinker for years. I brewed beer and drank daily. I also have had high cholesterol for many years. The drinking certainly affected the cholesterol. A couple of years ago I started getting very sharp stabbing pains in my toes in the evening. I can't say if it was when I was drinking or not because I know these symptoms are more common at night and that's when I drank. I started to get pins and needles shortly after mostly in my feet and occasionally in my hands. I would get a stabbing pain in my thigh and foot at the same time.

A few other notes:
1. I have impaired fasting glucose in the pre-diabetic range.
2. I've had high cholesterol for many years. It's getting better with diet and exercise.
3. History of alcohol use. I've almost entirely quick alcohol. I've had a couple of drinks in that last couple of weeks but I may quit entirely.
4. I haven't found much that helps except for reducing alcohol but lately even that doesn't seem to help.
5. It's my perception that stress increases the symptoms.
6. Exercise seems to help. Even just moving around. Switching to a standing desk as well although I'm not sure.

I'm mostly just sharing to see if there's anyone who can benefit or help me. I'm doing a lot of reading right now and don't have many conclusions.

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

laureen8844 | @laureen8844 | Jan 28, 2021
In reply to @jeffrapp "Hello lauren8844 The methylmalonic acid test is a more sensitive test for vitamin B12 deficiency. It..." + (show)
@jeffrapp

Hello lauren8844
The methylmalonic acid test is a more sensitive test for vitamin B12 deficiency. It is used as a follow up test for those that have low or low normal levels of B12, particularly if they have symptoms, such as those patients with PN.
B12 is a water soluble vitamin secreted by the kidneys. It does not "stay" or accumulate in the blood. This is even true of people who have B12 absorption problems.
The folate test has nothing to do with the B12 test or problems with B12 absorption.. It tests for the level of another B vitamin, folic acid.
I'd be curious to find out if @nukhan is taking supplements, particularly B12. If so, that would explain the high B12 level on the test.
The proper order would be a screening B12 test, then, if indicated, a methylmalonic acid and homocysteine test. If the last 2 are abnormal, a problem with B12 absorption is present. There are many causes of this condition, including old age.

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5355842/ https://ada.com/conditions/vitamin-b12-deficiency/ https://pubmed.ncbi.nlm.nih.gov/3927946/#:~:text=The%20interrelationship%20between%20these%20two,as%20the%205%2Dmethyl%20derivative. worth a read

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1 reply
laureen8844 | @laureen8844 | Jan 28, 2021
In reply to @bogibus "Hank, hi. I have been battling with various issues and wrong diagnoses for years. I was..." + (show)
@bogibus

Hank, hi. I have been battling with various issues and wrong diagnoses for years. I was finally diagnosed with small fiber polyneuropathy after labs and punch biopsies. I am already on lyrica, cymbalta and multiple other meds for issues that occur as a result of the effects on various parasympathetic systems. I saw you mentioned cannabis as something you have used for relief. I have pain/freezing, twitching etc especially in my legs but also in my fingers. I live in CO so cannabis is legal and readily available. I also suffer with overwhelming fatigue a lot of the time. I have tried cannabis before have ended up exhausted for 24 hrs after. I tried various strains, many of which were supposed to increase energy but also some for help with sleeping. So far all have left me extremely tired for 24 hrs and I was wondering if you had any suggestions for tyles/strains that you have had some luck with.
On a side note, i tend to have odd reactions to things. I finished a 5 day, 1000mg a day Solu-Medrol infusion treatment 2 weeks ago. Apparently most people end up wired and sleepless as a result of such high doses of steroids. I was barely able to stay awake long enough to start the infusions each day. I am still spending most of my days in bed but it is slowly getting better.
Any help or suggestions you could make would be greatly appreciated!
Thanks
Megan

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Megan . Thank you for your comments. I am truly sorry you are going through this I am going through the same exact thing . You managed to bring me some comfort though as you mentioned you are suffering twitching. I haven't been fully diagnosed with SFN and are going for my biopsy in few weeks but the witching has me concerned . A few people with SFN have mentioned twitching .Thanks

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1 reply
bogibus | @bogibus | Jan 28, 2021
In reply to @laureen8844 "Megan . Thank you for your comments. I am truly sorry you are going through this..." + (show)
@laureen8844

Megan . Thank you for your comments. I am truly sorry you are going through this I am going through the same exact thing . You managed to bring me some comfort though as you mentioned you are suffering twitching. I haven't been fully diagnosed with SFN and are going for my biopsy in few weeks but the witching has me concerned . A few people with SFN have mentioned twitching .Thanks

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@laureen8844 the twitching can be really awful at times. I do not have it all the time but often enough to notice and be concerned. This disease is such a weird thing. It attacks every part of the body indiscriminately and the way it jumps from area to area can be both frustrating and scary. I hate that you are going through this...hate that any of us are...but I have to admit, I am grateful to have found Connect. Do you have a date for your punch biopsies? Have you had the TS-HDS antibody test. It is just blood work but it was what gave me my conclusive diagnosis.
Please keep me updated on your results and feel free to reach out to me anytime 😊

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laureen8844 | @laureen8844 | Jan 28, 2021

Thank You .That is the same nature of my twitching . I don't have it all the time..it moves but mostly in my legs . It isn't deep twitching but enough to notice. I am grateful I found connect as well . I had to basically educate my neurologist on what SFN is. He replied you don't get twitching or cramps. Do you get cramps. I get very mild in my feet. What is the TS-HDS antibody test . I will ask my Dr to schedule that . Do you work out . I have found working out...good diet...no drinking really helps. Thanks so much for your help. John

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2 replies
laureen8844 | @laureen8844 | Jan 28, 2021

I had high vitamin B 12 . I didn't take a single supplement . High levels of B12 100% indicate a problem with absorption . You are wrong .

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helennicola | @helennicola | Jan 28, 2021
In reply to @laureen8844 "Thank You .That is the same nature of my twitching . I don't have it all..." + (show)
@laureen8844

Thank You .That is the same nature of my twitching . I don't have it all the time..it moves but mostly in my legs . It isn't deep twitching but enough to notice. I am grateful I found connect as well . I had to basically educate my neurologist on what SFN is. He replied you don't get twitching or cramps. Do you get cramps. I get very mild in my feet. What is the TS-HDS antibody test . I will ask my Dr to schedule that . Do you work out . I have found working out...good diet...no drinking really helps. Thanks so much for your help. John

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laureen, I do get cramps, in my calves and feet, if I move my legs a certain way in bed I will get a cramp, sometimes I can work it out without rising, other times I use Theraworx spray and walk a little. I do take magnesium glycinate 2xday which I think helps also. I’ve had some twitching-in my left thumb but I get that creepy crawly feeling more often in my calves when sitting which only lasts a short while. Have you experienced the “dripping cold water” sensation on your legs? that only lasted a few months for me. Just FYI and hope SFN is ruled out for you. Helen

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bogibus | @bogibus | Jan 28, 2021
In reply to @laureen8844 "Thank You .That is the same nature of my twitching . I don't have it all..." + (show)
@laureen8844

Thank You .That is the same nature of my twitching . I don't have it all the time..it moves but mostly in my legs . It isn't deep twitching but enough to notice. I am grateful I found connect as well . I had to basically educate my neurologist on what SFN is. He replied you don't get twitching or cramps. Do you get cramps. I get very mild in my feet. What is the TS-HDS antibody test . I will ask my Dr to schedule that . Do you work out . I have found working out...good diet...no drinking really helps. Thanks so much for your help. John

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My twitching has been primarily in my legs also. My left leg is usually much worse then my right for some reason. Recently i have begun to have twitching in my pinkie fingers, mainly at night. Very mild but, like you saud, enough to be irritating, especially when I am trying to sleep.
The TS-HDS Autoantibody test was just a blood draw (i am 99% sure...I have had A LOT of tests😂). I know that my values came back at 21,000 [H] and it should be <10,000. That was when my neuro knew I had a rare type of SFN. Small fiber polyneuropathy.
I am very active when my body allows. Crippling fatigue can "take me out of the game" for weeks or even months. Aside from that, prior to COVID I was kayaking 2 or 3 times a week, hiked a few times a week lifted weights (to kept strength but also to fight off osteoporosis from all these steroids) and did pilates. Before that I was riding, training and competing 5 to 6 days a week as well as doing pilates, spinning and lifting with a personal trainer.
Except for the fact that working out sometimes make me extremely dizzy and disoriented I agree with you, it makes me feel better, helps with twitching (at least while I am actually being physical) and keeps me in a better mental state. I feel like the healthier I am the better/longer I will be able to maintain some sort of active, "normal" life style.
I am also a big believer in healthy food. I eat only organic and I don't eat much meat but what I do eat is always grass fed. No drinking here either. I do consume A LOT of soda, it is always zevia which is natural, made from sevia and no dyes etc. Caffine is a necessity for me!
Do you have any issues with fatigue, brain fog, or migraines?
As for cramping, I do get cramping in my feet too. They come out of no where and thankfully they pass fairly quickly too.
Megan

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salve97 | @salve97 | Sep 30, 2021

Hello I just read your post and feel your symptoms. You posted 2018, since then how have you been. Regressed or.progressed
Thanks

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