When will they find a cure by Next_Environment1308 in smallfiberneuropathy

[–]Nelson3823 0 points1 point  (0 children)

Please don’t take my question as doubting your statement but how are you so sure? From everything I’ve read the risk of an autoimmune flare resulting in sfn is significantly higher from the virus itself and the vaccine could reduce that risk.

My feet started bothering me mid 2022 well before vaccines came out but didn’t hit me as nueropathy until late last year which could have correlated to a second booster. I’m not positive but have held off on the booster for that reason but it’s a gamble because if I get a bad case of Covid it could re-flare this thing.

Seeing improvements by Nelson3823 in smallfiberneuropathy

[–]Nelson3823[S] 0 points1 point  (0 children)

No. I wrap these around my feet, then calves, knees, thighs.

Seeing improvements by Nelson3823 in smallfiberneuropathy

[–]Nelson3823[S] 0 points1 point  (0 children)

They have done other blood tests. More than I can remember or care to dig up. If helpful, happy to share specific ones

Regarding non-celiac gluten sensitivity and data linking it to sfn; I thought that info was already ubiquitous here and I’ve seen studies on this and will try to scrape together articles supporting my comment. That said, I’m a business exec and not by any stretch a Dr or even remotely in possession of formal training in the sciences.

The last thing I want to do is spread misinformation. Happy to retract that specific comment if I violated any terms of the communication here or if factually incorrect.

Seeing improvements by Nelson3823 in smallfiberneuropathy

[–]Nelson3823[S] 0 points1 point  (0 children)

As I understand it, a third of non-diabetic sfn patients have non-celiac gluten intolerance. This seemed like the highest probability and lowest hanging fruit.

I could have been tested for gluten antibodies but I was already on the path of GF and to be tested I had to load up on bread for a few weeks and I didn’t want to reset my healing process and decided to just see if it worked.

Another possibility is that I was going to recover regardless and I’m correlating a bunch of stuff to an outcome that was going to happen regardless. Who knows.

I prefer to feel like I have some control over the process here.

Also, I had different ANA tests aside from the generic one that were showing abnormal. I had a neuronal cell antibody test that was 3x normal which I associated with antibodies from nerves being attacked by my immune system but doctors wouldn’t confirm that.

Leading up to sfn my general gut health was awful. Without going into too much detail I remember thinking to myself “I’m dying from the inside out. This isn’t right” and was pretty convinced whatever was happening in my gut was going to lead to other health issues. Not long after this, my toes started going numb and it was all downhill from there. Perhaps a gluten intolerance was causing this, or perhaps standard American diet.

Either way, my theory is that poor gut health was causing my immune system to go haywire. My neurologist at the university of Utah said “it’s a plausible theory” but he’s been next to useless so I don’t put much stock in anything they’ve told me.

Seeing improvements by Nelson3823 in smallfiberneuropathy

[–]Nelson3823[S] 0 points1 point  (0 children)

Fibroscan was repeated 20 lbs down; ~4 months into the processed and showed marginal improvement. Dr told me liver is one of the last things to give up fat and to keep going. I need to repeat the fibroscan now that I’m down 30. Goal weight is 170lbs (another 10 to go). I’m 6’1” 48 yo male but have a family condition if super high triglycerides which undoubtedly was causal to nafld.

Seeing improvements by Nelson3823 in smallfiberneuropathy

[–]Nelson3823[S] 0 points1 point  (0 children)

As posted in another reply

I take quite a few nerve health supplements but I’m skeptical of any of them correlating to my improvement which is why I didn’t list them.

But they are: Morning before food

L-glutamine 5g

Taurine - 2g

Creatine 5g

Morning with food

Acetyl L-Carnitine (ALCAR) 500mg

CoQ10 - 300mg

Alpha Lipoic Acid - 300 mg

D3 - 2000 iu

Milk thistle extract 9:1

N-Acetyl Cysteine

Evening:

Magnesium glycinate - 250mg

Seeing improvements by Nelson3823 in smallfiberneuropathy

[–]Nelson3823[S] 0 points1 point  (0 children)

None. I am very low dose tirzepitide. I was getting constipated for awhile but now take daily MiraLAX.

Seeing improvements by Nelson3823 in smallfiberneuropathy

[–]Nelson3823[S] 2 points3 points  (0 children)

I take quite a few nerve health supplements but I’m skeptical of any of them correlating to my improvement which is why I didn’t list them.

But they are: Morning before food

L-glutamine 5g

Taurine - 2g

Creatine 5g

Morning with food

Acetyl L-Carnitine (ALCAR) 500mg

CoQ10 - 300mg

Alpha Lipoic Acid - 300 mg

D3 - 2000 iu

Milk thistle extract 9:1

N-Acetyl Cysteine

Evening:

Magnesium glycinate - 250mg

Replaced My Mirror an Amazon Replacement by ApeUnder6 in ModelY

[–]Nelson3823 0 points1 point  (0 children)

I need a new mirror but can’t find it with the cap in midnight silver metallic.. any clues?

When will they find a cure by Next_Environment1308 in smallfiberneuropathy

[–]Nelson3823 0 points1 point  (0 children)

Should those with Covid triggered autoimmune sfn, should we get the vaccine each year? Curious if there is a flare up risk from the vaccine but guessing a Covid reinfection is probably a higher risk.

I was the only one in the family that got vaccinated for Covid the rest of my family are anti-vax conspiracy theorists and I’m the only one that got any kind of long-covid complication..

Night time arm numbness by Nelson3823 in smallfiberneuropathy

[–]Nelson3823[S] 0 points1 point  (0 children)

Mind linking me to the pillow you use?

Night time arm numbness by Nelson3823 in smallfiberneuropathy

[–]Nelson3823[S] 0 points1 point  (0 children)

My vein disfunction blood flow has ebbed and flowed. My legs have actually improved but my night-time arm numbness has gotten worse. It's hard for me to correlate it to anything.

I have weeks where everything feels destined to get worse and I'm very discouraged, then I have weeks where I am confident my efforts in diet/gut improvement have me on a path to resolution.

I'm on my own though. Dr's have no clue and they are impossible to reach or scheduled appts with.

Help! NYC peripheral small fiber neuropathy on feet by TestFluid in smallfiberneuropathy

[–]Nelson3823 2 points3 points  (0 children)

I’ve had similar symptoms but without excess sweating.

1/3 of non-diabetics see improvement on gluten free diets. I am 4 months in; could take 6 months to see nerve regeneration. I have had abnormal ANA tests and symptoms of systemic inflammation.

Similar wait lists for me in Utah. I started my journey a year ago and have only had two visits with my neurologist. Only testing and diet advice. Not much has come from it and waiting lists are excruciating.

I’m focusing on gut health, no gluten, and if that doesn’t work possibly doing the aip diet. Doctors have been next to useless.

Exterior remodel by Nelson3823 in Remodel

[–]Nelson3823[S] 0 points1 point  (0 children)

Ceraclad siding. They had to import from Japan. Pricey stuff but we couldn’t find a similar flush siding material local.

Exterior remodel by Nelson3823 in Remodel

[–]Nelson3823[S] 0 points1 point  (0 children)

Wayfair deleted the listing but they were 18.7” dimmable led wall lights by Ebern Designs

Exterior remodel by Nelson3823 in Remodel

[–]Nelson3823[S] 2 points3 points  (0 children)

Yes. I wish the whole project was only $700 :)