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Newly diagnosed with PN - odd change in finger pads

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Old 07-01-2017, 11:26 AM   #11
janieg
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Yes, my engineering degree didn't quite prepare me for debugging the human body.

Please take this with a grain of salt and understand that every one of us is genetically unique with our own set pf problems, but here are the supplements that I think have helped me:

- High quality fish oil - 1400 mg/day (Google "ER stress fish oil")
- R-Lipoic Acid - I tested low (Read MrsD's posts on it, though. I don't think she's a fan)

I mention these two because when my SFN first hit, acutely, I was a mess. When I started the RLA, I feel it dialed back a notch. And then increasing my fish oil intake seemed to help even more.

I've also recently started taking a high quality biotin supplement which seems to be straightening out hypoglycemia and metabolic issues I was having. I have a rare genetic mutation that causes this. I don't think the biotin is helping the neuropathy, though. I had been hoping it would because extremely low levels can cause profound neurological problems.

My TENS unit seems to help me quite a bit at night. It cycles on any off at a one hour interval. I only need to use it when I'm really flaring. I crank it up, and it seems like that sensation produced by the current is all my brain processes. And because I know that current is SUPPOSED to be there, it doesn't register as a problem like all the other neuropathic weirdness and discomfort does. I don't pretend to understand it well, but I'm thrilled to have that tool in my arsenal.

Oh, and the magnesium cream or spray I use on my feet seems to help when they're bad as well. I also think oral magnesium helps the crazy "internal twitching" I feel in my legs.

Quote:
Originally Posted by Apex Clipper View Post
Hi Janie, ahh yes, if only our bodies could be debugged as logically as I used to debug communication systems. Not quite the same I'm finding :~)

I was wondering which supplements or processes you listed were the most effective for you?

When I started getting significant numbness in my right foot I brought out a TENS unit that I purchased years ago for a lower back issue. On first application to the numb area on my foot I couldn't even feel the current on the highest setting. Did a 30 minute session anyways. 24 hours later on repeat I now had sensitivity on a 1/3 intensity setting. It's a temporary affect as I'm sure you know.
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Idiopathic, Full Body, Small Fiber Neuropathy since 11/2013. Symptoms include altered sensation in toes; constant tingling/vibrations in feet and lower legs; intermittent tingling in temples, scalp and face; full body "buzzing" in the morning (suspect mild dehydration); referred sensation in feet cause by touch; occasional bouts with severe cramping in my feet and legs; when flaring, full body burning.

Metabolic issues: FBG -88 A1C - 5.1 with glucose spikes near 300, can't metabolize alcohol, and salt consumption makes my neuropathy 100x worse.

Current treatments:
  • Omega 3's - Fish Oil (2400 mg EPA, 1200mg DHA), 200 mg Magnesium Threonate
  • 5 mg Meribin Biotin for low-normal biotinidase levels.
  • Low carb "back to the farm" diet, lots of water
  • Quell TENS unit, 5% lidocaine patches, magnesium cream, CBD oil

Last edited by janieg; 07-01-2017 at 11:47 AM.
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Old 07-02-2017, 09:57 PM   #12
Apex Clipper
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Originally Posted by mrsD View Post

Lots to think about therefore.
I do pay fairly close attention to food intake and rarely eat out so MSG is most likely not a culprit. Also maintain a reduced refined sugar diet. I had not considered a histamine association so will research that more.

Periodically I have had "episodes" of almost complete remission of symptoms that have lasted an average of 1-3 days but these are becoming rare now and the symptoms are becoming more relentless. So it does appear to be systemic. I've had antibiotic treatment in the past but well over 10 years ago was the last time. No statins. For B-12 they tested m-malonic acid or MMA serum which I've read is a highly sensitive test and the result was 0.11 umol/L in a range of 0.00 - 0.40.

After reflecting on any new changes to my regular diet or medications preceding the onset of symptoms there was one change. Just shy of a year before symptoms I switched from topical testosterone replacement therapy, to treat low testosterone, to intra-muscular injections of generic testosterone cypionate simply because my insurance company no longer covered the extremely expensive topicals. Doctors nix any association but I'm left wondering and considering discontinuation as the test.

Yes, I wound up here due to dissatisfaction with local doctors. After completing basic diagnostic testing for the most common causes they are now more then reluctant to pursue any further diagnostics, in fact they have directly declined to do anything more in that area.

I will look further in to DNA testing as you suggested, I'm familiar with 23andMe from working on my family's genealogy but did not do any DNA testing. I very much appreciate your input here, thanks.
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Old 07-02-2017, 10:07 PM   #13
Apex Clipper
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Quote:
Originally Posted by janieg View Post
Yes, my engineering degree didn't quite prepare me for debugging the human body.

Please take this with a grain of salt and understand that every one of us is genetically unique with our own set pf problems, but here are the supplements that I think have helped me:

- High quality fish oil - 1400 mg/day (Google "ER stress fish oil")
- R-Lipoic Acid - I tested low (Read MrsD's posts on it, though. I don't think she's a fan)

I mention these two because when my SFN first hit, acutely, I was a mess. When I started the RLA, I feel it dialed back a notch. And then increasing my fish oil intake seemed to help even more.

I've also recently started taking a high quality biotin supplement which seems to be straightening out hypoglycemia and metabolic issues I was having. I have a rare genetic mutation that causes this. I don't think the biotin is helping the neuropathy, though. I had been hoping it would because extremely low levels can cause profound neurological problems.

My TENS unit seems to help me quite a bit at night. It cycles on any off at a one hour interval. I only need to use it when I'm really flaring. I crank it up, and it seems like that sensation produced by the current is all my brain processes. And because I know that current is SUPPOSED to be there, it doesn't register as a problem like all the other neuropathic weirdness and discomfort does. I don't pretend to understand it well, but I'm thrilled to have that tool in my arsenal.

Oh, and the magnesium cream or spray I use on my feet seems to help when they're bad as well. I also think oral magnesium helps the crazy "internal twitching" I feel in my legs.
Yes indeed, understand that everyone is different and may or may not respond to various supplements or treatments. With my symptoms now becoming more relentless I'm becoming a mess on some days so can relate to that. Thanks for sharing some of the things most helpful for you and I hope you improve as time moves on.

Will have to find a consumable alternative to fish oil pills, tried them before but they are typically huge and hard to swallow for me!
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Old 07-02-2017, 10:10 PM   #14
janieg
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Originally Posted by Apex Clipper View Post

Will have to find a consumable alternative to fish oil pills, tried them before but they are typically huge and hard to swallow for me!
If you could stand swigging it....

Amazon.com: Pharmax - Finest Pure Fish Oil - EFA Supplement with Essential Oil of Orange to Support Bone, Brain, and Cardiovascular Health* - 6.8 fl oz (2 ml): Health & Personal Care

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Idiopathic, Full Body, Small Fiber Neuropathy since 11/2013. Symptoms include altered sensation in toes; constant tingling/vibrations in feet and lower legs; intermittent tingling in temples, scalp and face; full body "buzzing" in the morning (suspect mild dehydration); referred sensation in feet cause by touch; occasional bouts with severe cramping in my feet and legs; when flaring, full body burning.

Metabolic issues: FBG -88 A1C - 5.1 with glucose spikes near 300, can't metabolize alcohol, and salt consumption makes my neuropathy 100x worse.

Current treatments:
  • Omega 3's - Fish Oil (2400 mg EPA, 1200mg DHA), 200 mg Magnesium Threonate
  • 5 mg Meribin Biotin for low-normal biotinidase levels.
  • Low carb "back to the farm" diet, lots of water
  • Quell TENS unit, 5% lidocaine patches, magnesium cream, CBD oil
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Old 07-03-2017, 01:46 AM   #15
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Originally Posted by janieg View Post
If you could stand swigging it....
I could handle a teaspoon I think, good reviews overall and many say no fishy taste. Looks pricey but 40 doses per bottle translates to 90 cents a day. I just ordered a bottle, thanks for the link
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Old 07-03-2017, 05:15 AM   #16
mrsD
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There is always krill oil. We use costco brand 500 mg per day.
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Old 07-03-2017, 05:36 PM   #17
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Quote:
Originally Posted by Apex Clipper View Post
I could handle a teaspoon I think, good reviews overall and many say no fishy taste. Looks pricey but 40 doses per bottle translates to 90 cents a day. I just ordered a bottle, thanks for the link
There's a bigger bottle that brings the cost down a little, but I thought you might want to see if you can stomach it first. When I was using it a few years ago, my HDL was higher than my LDL. I'm going to try it again. It doesn't taste terrible, but you're still swigging oil.
__________________
Idiopathic, Full Body, Small Fiber Neuropathy since 11/2013. Symptoms include altered sensation in toes; constant tingling/vibrations in feet and lower legs; intermittent tingling in temples, scalp and face; full body "buzzing" in the morning (suspect mild dehydration); referred sensation in feet cause by touch; occasional bouts with severe cramping in my feet and legs; when flaring, full body burning.

Metabolic issues: FBG -88 A1C - 5.1 with glucose spikes near 300, can't metabolize alcohol, and salt consumption makes my neuropathy 100x worse.

Current treatments:
  • Omega 3's - Fish Oil (2400 mg EPA, 1200mg DHA), 200 mg Magnesium Threonate
  • 5 mg Meribin Biotin for low-normal biotinidase levels.
  • Low carb "back to the farm" diet, lots of water
  • Quell TENS unit, 5% lidocaine patches, magnesium cream, CBD oil
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Old 07-04-2017, 09:48 AM   #18
Texasron
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Angry Neuropathy

Quote:
Originally Posted by Apex Clipper View Post
I've had PN symptoms for over a year now but just recently obtained an "official" diagnoses from a neurologist, so I have joined this forum to see what I can learn from others who also suffer from this.

It's been discouraging to read on various medical sites how many forms of this disease remain idiopathic. Nonetheless, coming from a technical background I'm used to troubleshooting problems and take that approach to any problem in life which is do some research, don't assume but actually test where possible and with all due respect never rely 100% on any one persons opinion of the problem even if they are a doctor.

At this point I've had an EMG which revealed normal large fiber activity so I've been told this is small nerve neuropathy in feet and hands. I've had multiple blood tests which my neurologist said were unremarkable. I just obtained a copy of these tests and noticed the B6 level was over twice the upper range which my doctor did not mention. But then I read a post here that suggests a false B6 reading may not be that unusual so it's hard to know what's real on that.

The question I wanted to ask is about the appearance of the hands and if anyone else experienced this. At the height of the PN symptoms I had a sudden change in the fiingerpads at first. They developed a pruney appearance as if I had been in a pool for a long time. Loose skin as if there were air pockets under the skin as opposed to a normal fleshy fingerpad. Pressing against an object left an impression on the pads for an abnormal amount of time, as opposed to springing back normally. Within a month striations appeared on the skin further down the fingers. All of this was in conjunction with pins & needles in the fingertips and an abnormal sensitivity to cooler temperatures.

I have asked three doctors about this change of appearance in the hands and I'm getting something of a deer in the headlights response. One said he's never seen anything like that, another basically ignored my question and another tried to tell me it was normal.

My apologies for making this long, I'll try to be more succint in the future :~).
I have had small nurve neuropathy in both feet for 25 years. 10 years ago I got neurological test to confirm. Now I have symptoms of MG. My nurve pain originates in my low back. I have tried all the drugs, acupuncture, back surgery, steroid injections, and a new procedure where they inject a numbing agent in in each ankle, 8 shots in each every other day for a total of 64 injections each ankle. It worked well about half way thru, then the ankles got inflamed and I regressed back to where we started. Overall it was not successful!
I have cold feet all the time, cannot stand to have anything touch my feet so no socks or shoes, just flip flops. I just use pain killer to make it thru the day.
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Old 03-03-2019, 11:35 AM   #19
kmb sorefeet
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Hi there, I found YUGE thread while searching for information in my strange finger pads. I have had sfn for a little over a year. In feet for a long time. Then I noticed the wrinkling and pad deflation that match your photo. This was about 4 months ago. I now have dry skin on my Ganda and feet also. I guess I wasnt sure if this was the neuropathy but it seems more likely now. May I ask if you gave had any further changes? The neurologist cannotfind a cause in my case. I dont think he fully believes me! His view Id myfingers was that they were unremarkable. This strange skin effect has progressed though.

Hope to hear from you.

Keith



Quote:
Originally Posted by Apex Clipper View Post
I've had PN symptoms for over a year now but just recently obtained an "official" diagnoses from a neurologist, so I have joined this forum to see what I can learn from others who also suffer from this.

It's been discouraging to read on various medical sites how many forms of this disease remain idiopathic. Nonetheless, coming from a technical background I'm used to troubleshooting problems and take that approach to any problem in life which is do some research, don't assume but actually test where possible and with all due respect never rely 100% on any one persons opinion of the problem even if they are a doctor.

At this point I've had an EMG which revealed normal large fiber activity so I've been told this is small nerve neuropathy in feet and hands. I've had multiple blood tests which my neurologist said were unremarkable. I just obtained a copy of these tests and noticed the B6 level was over twice the upper range which my doctor did not mention. But then I read a post here that suggests a false B6 reading may not be that unusual so it's hard to know what's real on that.

The question I wanted to ask is about the appearance of the hands and if anyone else experienced this. At the height of the PN symptoms I had a sudden change in the fiingerpads at first. They developed a pruney appearance as if I had been in a pool for a long time. Loose skin as if there were air pockets under the skin as opposed to a normal fleshy fingerpad. Pressing against an object left an impression on the pads for an abnormal amount of time, as opposed to springing back normally. Within a month striations appeared on the skin further down the fingers. All of this was in conjunction with pins & needles in the fingertips and an abnormal sensitivity to cooler temperatures.

I have asked three doctors about this change of appearance in the hands and I'm getting something of a deer in the headlights response. One said he's never seen anything like that, another basically ignored my question and another tried to tell me it was normal.

My apologies for making this long, I'll try to be more succint in the future :~).
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