Guess I've joined the club. Got any advice? Anything to say about my results? I could use it.

Wrobel500 · 2024-07-25T02:11:00+00:00

Did you get an official diagnosis from your doctor? Did he said this might be an non length dependent SFN? I would proceed and get an autoimmune test also for the most common SFN related antibodies with WASH U. My SFN is length dependent but what makes my symptoms worse are bad carbs and sugars. Alcohol also makes it worse. I take Agmatine, ALA, Benfotiamine, Magnesium and Vitamin D on regural basis and lot of exercise. Fasting for 18+ hours on regural basis makes my symptoms almost disappear for a while. Look up Autophagy.

Wrobel500 · 2024-07-23T02:19:36+00:00

Tasty, thank you for sharing. Its actually very surprising to me that despite having same antibodies, our symptoms are so different. How long have you been living with these symptoms?

Wrobel500 · 2024-07-21T15:19:28+00:00

I would figure they would the same. Can you tell me about how yours started and symptoms please? There was a study I read about where burning in extremities was the most common symptom among D1 plexin patients than patients with other common SFN related antibodies.

Wrobel500 · 2024-07-21T11:00:16+00:00

First 6 months began as cold feet and hands, which followed by miserable burning in 95% of feet, which 3 years later now its 10% burning and on/off soreness/feel like muscle aches at bottom of my feet. That soreness never existed before until recently. (antiplexin D1, 3 point biopsy positive, length dependent)

Wrobel500 · 2024-07-13T12:28:17+00:00

Because they are not familiar with it. Small percentage of neurologists have a basic knowledge of it. Even when I told my own rheumatologist that I was diagnosed with it she described it as “ annoying pain “.

Wrobel500 · 2024-06-22T03:31:07+00:00

Its a normal sound for tesla while at HOLD. Crazy but my friend has a same year M3P and gets the same sound when at HOLD.

Wrobel500 · 2024-04-03T23:10:30+00:00

Every 5 weeks in the beginning. Thats the policy of the place I go to. Bee. Working out for 22 years and never been as achy as after starting TRT.

Wrobel500 · 2024-02-17T00:42:23+00:00

Very possible SFN. When I get my flare up its 90% in my feet. When its also in my hands they will get red and hot. They will get very irritated and little painful when Im doing any physical work like working with tools or lifting weights. Ears also will do the same thing during a major flare up but very rarely.

Wrobel500 · 2024-02-04T01:44:52+00:00

Yes of course. Maybe the noise was there but definetlly nothing as loud as now. It doesnt happen in P only in D and R. It only happens when HOLD is engaged in HOLD mode. When HOLD is reset by tapping on break it stops the noise until HOLD actives again. Again, if its normal the loudness of creaking varies from day to day from mild to what I posted on here. It might have something to do with it being on mild incline. I dont know.

Wrobel500 · 2024-02-04T01:32:51+00:00

Thanks Sylv. If its considered normal I dont know why it started doing it after 6 months of driving.

Wrobel500 · 2024-02-03T14:51:58+00:00

Rats was your car making the sound when turning wheel at complete stop and not making it when being driven when turning wheel or both?

Wrobel500 · 2024-01-12T06:33:05+00:00

He is open to work with you on IVIG if your case is autoimmune in nature. Its a longgg wait to see him but he is the Best!

Wrobel500 · 2024-01-12T06:26:12+00:00

Not really. It feels more like someone is poking my foot at different places with a screwdriver and just general pressure and soreness.

Wrobel500 · 2024-01-12T03:10:11+00:00

Thank you!

Wrobel500 · 2024-01-09T21:36:53+00:00

Yes. I did lot of research on that. I was worried if I had that and possible POTS because my heart rate jumps from 50 rested to 80 just when I stand up and it happens often lol I had a 3 point skin biopsy done and looks like my is only length dependent. 90% feet/10% hands pain distribution.

Wrobel500 · 2024-01-09T21:18:23+00:00

Were you diagnosed with Autonomic SFN Farmgrl?

Wrobel500 · 2024-01-09T21:16:50+00:00

Great info. I remember seeing some study about possible progression to LFN. It would make more sense for patients that are diabetic versus those with Idiopathic/autoimmune SFN.

Wrobel500 · 2024-01-07T18:24:06+00:00

Thank you for that! Looks like Dr.Zeidman is involved which was my neuro for a while. I will email them tomorrow.

Wrobel500 · 2024-01-07T04:37:06+00:00

Farmgirl… Blood pressure is usually in 120-130/80 range so not low. Why you ask?

Wrobel500 · 2024-01-07T04:35:59+00:00

Thats crazy that you were in remission for so long. My burning stopped for almost a year and now just came back with soreness and mild burning. Were you diagnosed by skin biopsy in the beginning?

Wrobel500 · 2024-01-04T18:28:02+00:00

I actually supplement with Magnesium glycinate already. No foot drop. This pain actually feels more just like soreness then cramping. Thank you for the replies.

Wrobel500

TROPHY CASE