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Possible SFN - Symptoms Fading/Coming Back

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Old 07-21-2018, 01:09 PM   #1
MCEC5
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Default Possible SFN - Symptoms Fading/Coming Back

Hi All,

Background:
I first noticed tingling & pins & needles in my feet and dull aches/cramps in my calves back in April and was referred to a neurologist. I was given a physical exam, EMG, NCS and full spine MRI which all came back negative. The Neurologist did not believe anything was wrong with me and told me to give it time.

I had been a daily drinker over a decade and decided to quit in April when I first had these symptoms around the same time I saw the Neuro. After 2 weeks they completely disappeared. I continued my alcohol abstinence for 3 more weeks and then went on a 4 day bender. 3 days after my last drink in May the symptoms returned and have persisted every day since and gotten worse. I now have tingling in both feet, cramps, aches and general soreness in both ankles, calves, thighs, & hamstrings. I also have plantar fasciitis type pain in the bottoms of my feet when I wake up and later in the evening. Exercise is becoming more difficult and causing fatigue and pain.

Follow up:
I have since seen 2 Neurologists a chiropractor, pain management specialist and rheumatologist and no one has been able to diagnose me with anything. I believe I have SFN, but neither Neuro believes I do and they are not in favor of a skin biopsy. I have had dozens of blood tests and nothing out of the ordinary outside of low/normal B12 (which I supplement in a high dose and is back around 1000), low Vitamin D, fasting glucose of 92 and low WBC.

Questions:
  1. Should I insist on a skin biopsy?
  2. Should I request additional blood work?
  3. Has anyone diagnosed with SFN had the symptoms completely disappear for weeks and come back?
  4. Does this seem to be alcohol related or a coincidence?

Thanks All!!
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Old 07-21-2018, 06:43 PM   #2
kiwi33
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Hi MCEC5

Welcome to NeuroTalk .

The causes of PN can be hard to diagnose; often it is idiopathic, which means that it has no known cause(s).

Your alcohol intake may well be significant. I have mild/moderate PN in my hands which very likely is a consequence of when I abused alcohol. I stopped drinking about 10 years ago and it is now stable/decreasing.

In this context this thread is worth checking out Alcohol Induced Neuropathy Part 2 . Members who are dealing with alcohol-induced PN use it to support and encourage each other.

All the best.
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Old 07-21-2018, 10:08 PM   #3
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@MCEC5, Sounds like you have great medical coverage to have all the tests done that you mentioned.

Quote:
Originally Posted by MCEC5
Should I insist on a skin biopsy?
Should I request additional blood work?
I understand your hope for finding a cause, and possible cure.

I would say yes, insist on a skin(or nerve) biopsy, and further blood labs, if possible.

For me the diagnosis was "idiopathic", case closed. I tried pumping up with B-12, labs showed that to be successful, but no appreciable change in my condition.

Best of luck.
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Old 07-23-2018, 12:20 PM   #4
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How much and what were you drinking every day? I'm not convinced that alcohol is responsible for PN unless it's abused.

Try backing completely off of salt and sugar for a few weeks and see if that has any effect.
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Old 07-23-2018, 01:10 PM   #5
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Quote:
Originally Posted by DishRag View Post
How much and what were you drinking every day? I'm not convinced that alcohol is responsible for PN unless it's abused.

Try backing completely off of salt and sugar for a few weeks and see if that has any effect.
Depending on the day anywhere from 3-15 drinks. I drank a lot for a long time and wouldnít be surprised if my pain is alcohol related, but itís strange that it initially disappeared completely for a month after quitting drinking and this time itís still here after 2 plus months sober. I have been limiting my carb/sugar intake, but havenít cut out salt. Is there any science behind that approach? Does it help with your symptoms? Iíll give it a shot.

Thanks
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Old 07-23-2018, 04:00 PM   #6
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Quote:
Originally Posted by MCEC5 View Post
Depending on the day anywhere from 3-15 drinks. I drank a lot for a long time and wouldnít be surprised if my pain is alcohol related, but itís strange that it initially disappeared completely for a month after quitting drinking and this time itís still here after 2 plus months sober. I have been limiting my carb/sugar intake, but havenít cut out salt. Is there any science behind that approach? Does it help with your symptoms? Iíll give it a shot.

Thanks
There is not much science here. Many just throw out what they have found helps them. I find this kind of info invaluable because we can all try over the counter things like food/drink/vitamins cheap and easy.

I found that salt....too much salt triggers my PN and my right foot will feel like a club for a day or three. This happened after eating boiled crawfish at the Breaux Bridge crawfish festival a couple of years ago(I ate a LOT).

I also like Margaritas, and after a camping weekend where I drank quite a few, the same old club foot showed up. That mix is way way too sweet.

I have not climbed up on the wagon yet, but am going to do so this winter to see if I have any change in symptoms. Right now, it's ball and big toe on both feet numb(feels like a sock wadded up under the ball of foot in boot), twitchy muscles, a occasional 'flushing' feeling up and down the legs.

My intake used to be 2-6 beers a evening or equivalent mixed drinks, but I have backed off a little bit in the last couple of months after my PN flared up for an unknown reason. I am trying to keep it to 2-4.

IPA's seem to aggravate it, but Dark beer like Guinness or Yee Haw Dunkle do not. I kinda wonder what the GMO role in all of this plays.....no GMO in the dark Beers as far as I know but lots in the US nationwide domestic beers.
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Old 07-23-2018, 05:56 PM   #7
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Quote:
Originally Posted by DishRag View Post
There is not much science here. Many just throw out what they have found helps them. I find this kind of info invaluable because we can all try over the counter things like food/drink/vitamins cheap and easy.

I found that salt....too much salt triggers my PN and my right foot will feel like a club for a day or three. This happened after eating boiled crawfish at the Breaux Bridge crawfish festival a couple of years ago(I ate a LOT).

I also like Margaritas, and after a camping weekend where I drank quite a few, the same old club foot showed up. That mix is way way too sweet.

I have not climbed up on the wagon yet, but am going to do so this winter to see if I have any change in symptoms. Right now, it's ball and big toe on both feet numb(feels like a sock wadded up under the ball of foot in boot), twitchy muscles, a occasional 'flushing' feeling up and down the legs.

My intake used to be 2-6 beers a evening or equivalent mixed drinks, but I have backed off a little bit in the last couple of months after my PN flared up for an unknown reason. I am trying to keep it to 2-4.

IPA's seem to aggravate it, but Dark beer like Guinness or Yee Haw Dunkle do not. I kinda wonder what the GMO role in all of this plays.....no GMO in the dark Beers as far as I know but lots in the US nationwide domestic beers.

Interesting. I have no idea what if anything triggers or helps my symptoms. The leg/feet pain is constant all day every day in one spot or another. Iím on about a dozen supplements and Iíve thought about elimination diets, but Iím still just hoping the pain fades away like it did the 1st time. Iím still not even sure I have neuropathy. According to my neruoís I donít. Following up again this week so weíll see how that goes. Whatever this is itís miserable and Iím about a week away from jumping off the wagon to deal with the pain.
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Old 07-23-2018, 08:33 PM   #8
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Just deal with it for a while and see if your brain does not eliminate some of the ....uhmmmm 'features'. Now I notice my PN in the morning and the evening after the day is done...I can deal with that.

Stay on the Wagon for now, that way there is no clouding of the issue. You are already there, so read this sticky:

STICKY - The Vitamin B12 Thread:

and see if anything parallels the problems you have.
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Old 07-24-2018, 08:48 AM   #9
MCEC5
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Quote:
Originally Posted by DishRag View Post
Just deal with it for a while and see if your brain does not eliminate some of the ....uhmmmm 'features'. Now I notice my PN in the morning and the evening after the day is done...I can deal with that.

Stay on the Wagon for now, that way there is no clouding of the issue. You are already there, so read this sticky:


and see if anything parallels the problems you have.
Thanks for responding. Iím trying to stay positive and will likely stick with the sobriety. Iíve actually heard some stories where alcohol related neuropathy can take several months to recover from which can be somewhat reassuring.
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