Supplements

Posted by jerryw @jerryw, Nov 25, 2023

Hello everyone. Has anyone here ever tried any of these supplements like, " Nuphoria ", " Nerve Renew", or R- Alpha-Lipoic-Acid". Would like to see if someone has actual experience with them. Thank you.

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@johnbishop

I have not had a skin punch biopsy done before. My Mayo neurologist diagnosed me with idiopathic small fiber peripheral neuropathy using an EMG and a few other tests along with a physical exam. I am not sure if a podiatrist can do a skin punch biopsy. Hopefully someone with experience can answer the question.

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John - My podiatrist is a foot surgeon and he offered to do a skin punch biopsy which I turned down due to my conclusive diagnosis at Mayo. When I reminded him, I flew to MN, he said OK, never mind.

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@julbpat

Any doctor who is trained can do the punch biopsies. I think podiatrists can’t, because they cannot work on anything but the foot area, per their title. I had mine done by a pain doctor who does them on a consultation basis - meaning I was not seeing him for pain, just sent there by my neurologist for the biopsy. I imagine a dermatologist would have the training and set-up to perform the biopsy.
It is standard to take three samples - ankle, knee and upper thigh. It has to be ordered by your doctor. So your doctor would know where to send you.
It’s not a complicated procedure, but like any biopsy, the sample has to be correctly prepared, sent to the appropriate lab, and then the results have to be interpreted by the doctor.

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Are the wounds on your skin from the biopsy just scrapes, like a skin cancer biopsy? Just little divots you let heal under a Bandaid (vs stitches)?

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Debbie it’s exactly like a skin cancer biopsy. I guess they use the same tool. No stitches.
I was actually so excited and relieved when mine came back positive. Although it’s not a good illness to live with, the biopsy results gave credibility to what I had been saying for years, and gave me something concrete to say when explaining what was wrong with me.

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I actually have a picture of mine, in which my leg looks quite amazing. Doesn’t match the rest of my body right now! Can’t believe this was less than two years ago.

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@julbpat

I actually have a picture of mine, in which my leg looks quite amazing. Doesn’t match the rest of my body right now! Can’t believe this was less than two years ago.

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Hello julbpat. Thanks for your reply. Are those spots fine since healing up? What kind of Dr did your Biopsy? Thank. Jerry. And yes, your legs do look nice.

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@julbpat

Debbie it’s exactly like a skin cancer biopsy. I guess they use the same tool. No stitches.
I was actually so excited and relieved when mine came back positive. Although it’s not a good illness to live with, the biopsy results gave credibility to what I had been saying for years, and gave me something concrete to say when explaining what was wrong with me.

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Hello julbpat. One more question. Did you ever find out what caused the SFN?

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Just small punch biopsies, no scar at all. Like I said, my neurologist sent me to a pain doctor just for the biopsies, because he was set up to do them.
My SFN is idiopathic. Looking back, I’ve had various symptoms for many years, but the dramatic foot pain started at age 55 (I’m 63 now) when I stopped taking seizure medication (Tegretol). You can read my story elsewhere.
One of my sisters has the same symptoms. My dad (and his father) has had pain as long as I can remember, but not the same as mine. I have had genetic screening, but it was inconclusive.
I used to take great care of myself. Worked out with a trainer, maintained a good weight, was strong and active. The past eight years of pain have worn me down, plus I can’t do the aerobic exercise and weight lifting anymore - too painful. I swim laps now twice a week. Don’t even like it!

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@julbpat

Just small punch biopsies, no scar at all. Like I said, my neurologist sent me to a pain doctor just for the biopsies, because he was set up to do them.
My SFN is idiopathic. Looking back, I’ve had various symptoms for many years, but the dramatic foot pain started at age 55 (I’m 63 now) when I stopped taking seizure medication (Tegretol). You can read my story elsewhere.
One of my sisters has the same symptoms. My dad (and his father) has had pain as long as I can remember, but not the same as mine. I have had genetic screening, but it was inconclusive.
I used to take great care of myself. Worked out with a trainer, maintained a good weight, was strong and active. The past eight years of pain have worn me down, plus I can’t do the aerobic exercise and weight lifting anymore - too painful. I swim laps now twice a week. Don’t even like it!

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Thank you. Have you ever considered a Spinal Cord Stimulator?

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Jerry, I have not researched a Spinal Cord Stimulator, but I don't think it would help me. I have polyneuropathy, which means it affects nerves all over my body. I also have autonomic involvement. That would be dry mouth and eyes, dizziness, heart palpitations, itching, digestive and bladder issues - I can't think of a part of my body that isn't affected by small fiber neuropathy. It involves widespread pain and weakness, made worse by even limited overuse of my muscles - and I mean very limited use, like using a rake or broom for even 20 minutes. Fortunately I am able to treat most of this with corresponding medications - Restasis for dry eyes, Pindolol for elevated heart rate, Omeprazole for reflux that will lead to an esophageal spasm before I can stop it, etc etc. I use a small amount of Percocet, and Baclofen helps as a muscle relaxant. I go to PT for help with pain, and now OT for help with dizziness.
It's a lot. I think a lot of people with SFN just have the painful feet and limbs. Hopefully you will be in that category, if you do turn out to have SFN! But back to the Spinal Cord Stimulator - I don't think its meant for this type of polyneuropathy.

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@julbpat

Jerry, I have not researched a Spinal Cord Stimulator, but I don't think it would help me. I have polyneuropathy, which means it affects nerves all over my body. I also have autonomic involvement. That would be dry mouth and eyes, dizziness, heart palpitations, itching, digestive and bladder issues - I can't think of a part of my body that isn't affected by small fiber neuropathy. It involves widespread pain and weakness, made worse by even limited overuse of my muscles - and I mean very limited use, like using a rake or broom for even 20 minutes. Fortunately I am able to treat most of this with corresponding medications - Restasis for dry eyes, Pindolol for elevated heart rate, Omeprazole for reflux that will lead to an esophageal spasm before I can stop it, etc etc. I use a small amount of Percocet, and Baclofen helps as a muscle relaxant. I go to PT for help with pain, and now OT for help with dizziness.
It's a lot. I think a lot of people with SFN just have the painful feet and limbs. Hopefully you will be in that category, if you do turn out to have SFN! But back to the Spinal Cord Stimulator - I don't think its meant for this type of polyneuropathy.

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Thanks for your reply. God Bless you julbpat. Does what you take help with your pain? There will be a time when all pain will be gone. I believe the Lord is on his way back sooner than later. I had a EMG 2 weeks ago from knees down, and results were all normal. I can't get into Neurologist until Mid March. I keep calling them to see if any cancelation though. Today I found a Podiatrist under my insurance who does SFN Biopsy. I am going Friday to get that done. They said to me they do 3 spots, 1 on top of foot, 1 above ankle and 1 above calf. I was hoping they would be doing it in spots like you had done. But I suppose better than nothing. Also our deductible and out of pocket is met for the year, so it won't cost me anything. I am still going to ask the Dr doing the 3 spots if they can do one up below hip, kind of like where your 3 were done. One more question. There are times when I move my ankles around ( up and down, and in circles, once a week maybe) it feels like they are stretching and tendants and ligaments are like ripping apart, and on bottoms of feet. Really weird. I do have 5 bulging disc in lower back from concrete work for 26 years and foraminal stenosis in a couple spots and arthritis in a couple. And they did show me MRI where all discs are pressing against sciatic nerve. Well, I suppose even the spots the Podiatrist does will at least let me either rule out SFN or not. I hope are well. My prayers are with you. Jerry

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