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My SFN Symptoms and Questions

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Old 10-01-2019, 01:18 PM   #1
sdm11
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Default My SFN Symptoms and Questions

Hi everyone, I'm new to the group. About a year ago, my feet started getting hot when I walked around a while. This progressed to the point where they get hot when I walk a lot or workout, or am in a hot room with shoes on, etc. Not too bad a symptom, and I've learned to live with it. Until recently, this was my only symptom. I had a negative EMG and got a QSART (negative) and skin biopsy. The biopsy was technically negative for SFN but very close to the margins, so my neurologist basically thinks I have very minor SFN. He's suggested starting on very low dose Gabapentin (100 mg at night) and progress to a still low does (300 mg at night) to see if it helps. I'm also on B complex, Alpha Lipoic Acid, Magnesium, Potassium, and Turmeric, along with a multi vitamin. Also trying out CBD oil. I don't have diabetes and the blood work came back normal. I've stopped alcohol. I have never been an alcoholic, but have been a fairly heavy drinker because I love and collect wine.

I recently had a new symptom that I think is related to the SFN, although not sure. Now, whenever I got hot (either from being out in the warm weather or working out) my back gets itchy and slightly painful pins and needles all over. It's really uncomfortable and very worrisome that the SFN is progressing. If this goes on, I won't be able to be outside in warm weather, which is scary for quality of life. Does anyone have these same symptoms???

I know there is a lot of frustration with general neurologists and how they deal with SFN on this board. Does anyone know of a great neurologist who specializes in SFN or at least PN and would be a real help to try to find causes or at least new and experimental treatments, rather than just prescribing drugs like Gabapentin? I have the resources to travel to the very best doctor if there is such a thing...the internet isn't much help in that respect.

Thanks everyone for your help!
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Old 10-02-2019, 06:35 AM   #2
glenntaj
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Default With neuropathy situations--

--that are initially "idiopathic", if one has the time and the (insurance) resources and wants to pursue advanced testing, one can contact one of the tertiary hospital centers that does advanced research in neuropathy and see if one can be worked up there. Often these places will do a much more extensive work-up than the average neurology office.

Among these are

Johns Hopkins in Baltimore
The Cornell Weill Center for Peripheral Neuropathy in New York (part of the New York Presbyterian Hospital system)
Massachusetts General in Boston
Jacksonville Shands in Florida
The Jack Miller Center in Chicago
Washington University Hospital neuromuscular center in St. Louis
University of California at San Francisco Medical Center


These are all places of extensive theoretical and research work in neuropathy and they will often do testing according to algorithmic protocols that most places simply don't have the background to do (and are often the places at which these protocols were devised).
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Joe Duffer (10-05-2019)
Old 10-02-2019, 10:05 AM   #3
Ctman
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Default

Quote:
Originally Posted by sdm11 View Post
Hi everyone, I'm new to the group. About a year ago, my feet started getting hot when I walked around a while. This progressed to the point where they get hot when I walk a lot or workout, or am in a hot room with shoes on, etc. Not too bad a symptom, and I've learned to live with it. Until recently, this was my only symptom. I had a negative EMG and got a QSART (negative) and skin biopsy. The biopsy was technically negative for SFN but very close to the margins, so my neurologist basically thinks I have very minor SFN. He's suggested starting on very low dose Gabapentin (100 mg at night) and progress to a still low does (300 mg at night) to see if it helps. I'm also on B complex, Alpha Lipoic Acid, Magnesium, Potassium, and Turmeric, along with a multi vitamin. Also trying out CBD oil. I don't have diabetes and the blood work came back normal. I've stopped alcohol. I have never been an alcoholic, but have been a fairly heavy drinker because I love and collect wine.

I recently had a new symptom that I think is related to the SFN, although not sure. Now, whenever I got hot (either from being out in the warm weather or working out) my back gets itchy and slightly painful pins and needles all over. It's really uncomfortable and very worrisome that the SFN is progressing. If this goes on, I won't be able to be outside in warm weather, which is scary for quality of life. Does anyone have these same symptoms???

I know there is a lot of frustration with general neurologists and how they deal with SFN on this board. Does anyone know of a great neurologist who specializes in SFN or at least PN and would be a real help to try to find causes or at least new and experimental treatments, rather than just prescribing drugs like Gabapentin? I have the resources to travel to the very best doctor if there is such a thing...the internet isn't much help in that respect.

Thanks everyone for your help!
HI SDM...I also considered myself a moderate drinker and non alcoholic. About six months ago I started experiencing tinging in my hands and feet. There were also some other symptoms but those were the main ones. Neurologist did an EMG and basically said I had "very mild polyneuropathy". All other tests are normal and I am in excellent health in every other way. The suspected cause is alcohol - doc says you can be a moderate drinker and still get PN from it. I tried to just cut back to only 1-2 drinks a week and started on the vitamin regimen detailed on this forum - there was very little improvement and perhaps slight progression in those first 6 months. I have now completely cut off alcohol for 2 1/2 weeks. I am going to stay dry (wine lover but alcoholic PN is progressive even if there is moderate drinking most that I have talked to and read agree). The Neurologists really are not helpful, so I have an appointment the end of this month at the Weill Cornell Peripheral Neuropathy center in NYC. I will document on this forum how that goes. Good luck!
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Old 10-04-2019, 05:09 PM   #4
mhw69
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Default

Quote:
Originally Posted by sdm11 View Post

I recently had a new symptom that I think is related to the SFN, although not sure. Now, whenever I got hot (either from being out in the warm weather or working out) my back gets itchy and slightly painful pins and needles all over. It's really uncomfortable and very worrisome that the SFN is progressing. If this goes on, I won't be able to be outside in warm weather, which is scary for quality of life. Does anyone have these same symptoms???


Thanks everyone for your help!
I have had this symptom. It might be indicative of a non-length dependent small fiber neuropathy if your feet and then your back is involved because the progression usually happens length wise. There are suggestions that non length wise SFN might be related to antibodies attacking your nervous system. If that is the case, it may be difficult for them to identify that as a cause.
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Old 10-05-2019, 04:52 AM   #5
kmb sorefeet
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Quote:
Originally Posted by Ctman View Post
HI SDM...I also considered myself a moderate drinker and non alcoholic. About six months ago I started experiencing tinging in my hands and feet. There were also some other symptoms but those were the main ones. Neurologist did an EMG and basically said I had "very mild polyneuropathy". All other tests are normal and I am in excellent health in every other way. The suspected cause is alcohol - doc says you can be a moderate drinker and still get PN from it. I tried to just cut back to only 1-2 drinks a week and started on the vitamin regimen detailed on this forum - there was very little improvement and perhaps slight progression in those first 6 months. I have now completely cut off alcohol for 2 1/2 weeks. I am going to stay dry (wine lover but alcoholic PN is progressive even if there is moderate drinking most that I have talked to and read agree). The Neurologists really are not helpful, so I have an appointment the end of this month at the Weill Cornell Peripheral Neuropathy center in NYC. I will document on this forum how that goes. Good luck!
Hi there. The same here. Find of a glass or two but completely stopped when I was stricken with painful feet. It’s slowly gotten worse anyway. Now my forefoot Pad’s have atrophied. My fingers are wrinkled and shrunken. I thought if related to alcohol it would stabilise!
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Old 10-11-2019, 07:13 PM   #6
Annavon
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Quote:
Originally Posted by kmb sorefeet View Post
Hi there. The same here. Find of a glass or two but completely stopped when I was stricken with painful feet. It’s slowly gotten worse anyway. Now my forefoot Pad’s have atrophied. My fingers are wrinkled and shrunken. I thought if related to alcohol it would stabilise!
I am a wine drinker also. I usually have a glass of wine or two with dinner and not every night. I stopped drinking for a short time to see if it made the symptoms worse. I notice that I get temporary relief and my symptoms the next day seem unchanged from the days I don't consume alcohol the previous night.

My neurologist suggested that my SFN was due to having the flu.

I also take gabapentin and use CBD oil. The combo helps with the tingling and therefore I feel less fatigued.
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Old 10-12-2019, 06:18 PM   #7
JTP1234
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I have been having some similar symptoms, and suspect alcohol to be the cause. Have an EMG, but physical exam and blood work all came back normal.

I have dialed any drinking back big time, but have a glass of wine or two every once in awhil. CTman, I have read the same things about any alcohol making it worse, bur just wondering if it is a reaction to the alcohol vs the PN actually getting worse. Clinically speaking, I don't think moderate to low amounts of alcohol can cause nerve damage.
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