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#11 | |||
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Member
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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:
Last edited by janieg; 07-01-2017 at 11:47 AM. |
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"Thanks for this!" says: |
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#12 | ||
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Junior Member
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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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"Thanks for this!" says: | mrsD (07-03-2017) |
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#13 | ||
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Junior Member
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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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#14 | |||
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Member
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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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#15 | ||
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Junior Member
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"Thanks for this!" says: | janieg (07-03-2017) |
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#16 | |||
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Wisest Elder Ever
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There is always krill oil. We use costco brand 500 mg per day.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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#17 | |||
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#18 | ||
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Junior Member
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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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#19 | ||
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Junior Member
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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 wasn’t 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 don’t think he fully believes me! His view I’d myfingers was that they were unremarkable. This strange skin effect has progressed though.
Hope to hear from you. Keith Quote:
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#20 | ||
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Newly Joined
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I have the same thing. My hands and fingers have had pins and needles. That eased up today and my fingers now look like the have been soaking in water all day and they are sensitive. I hate the feeling. This definitely is a sign of PN. Don’t know what caused mine, I am on a drug for my atrial fibrillation called flecainide and that can damage nerves, my glucose readings were high a few times maybe it could be that?
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