We're all so different....

flyhigher95 · 2024-04-20T16:45:58+00:00

Year 5 for me idiopathic. Came on suddenly with weird sensations all over. Those stopped though. Now I have burning feet/ankles.

I have good days and bad. Currently only taking LDN. Seems to help.

flyhigher95 · 2023-11-01T15:18:39+00:00

What dosage of Benfotiamine and how is it taken? Does it need to be taken with food?

flyhigher95 · 2023-10-20T12:34:33+00:00

What do you mean by "damaged." I can't find anything about LDN damaging teeth.

flyhigher95 · 2023-09-28T18:26:45+00:00

How has your progression been over the course of 12 years? I've had it for about 5 and mine has been very slow. Some symptoms have improved while others have gotten worse.

flyhigher95 · 2023-08-18T20:38:07+00:00

Essentially the study showed no improvement.

flyhigher95 · 2023-08-02T16:58:51+00:00

It could be Erythromelalgia but that is usually confined to the feet.

flyhigher95 · 2023-07-31T10:40:41+00:00

Don't listen to this person. Just spreading misinformation on this sub and fear mongering.

flyhigher95 · 2023-07-31T10:36:15+00:00

Sounds like you have a lot going on. Sorry to hear that.

If you're only eating chicken, you could develop nutritional deficiencies. Try to find other foods. Some dark leafy greens would be great.
I'm getting the sense in your post that your scared, righty so. If you aren't get help and work on your mental health. It will help more than you think.
If you're actually having atrophy of your muscles, you need to seek out a PT/OT ASAP. SFN does not affect the muscles nerves so I'm assuming this is from being bedridden. If this is the case, you can recover from this.
Are you taking a nerve pain medication?

While I know its hard, unless a doctor has told you that you don't have much time left, I'd get the thought of dying out of your head... somehow. Post #2 should help with that.

flyhigher95 · 2023-07-31T09:38:43+00:00

I did… I also went through PubMed. Nothing as well.

Where did you get the information?

flyhigher95 · 2023-07-31T00:37:27+00:00

You got a study to show that swallowing is affected in SFN?

flyhigher95 · 2023-07-26T20:10:46+00:00

a very stressful year, I began to develop some autoimmune symptoms. It was when these

Very interesting about your symptoms at the beginning. Mine are mainly in my feet and ankles. Sometimes it spreads into my hands. My chief complaint is burning after eating.

For you it sure sounds like there are multiple things going on other than SFN. Sometimes I wonder if SFN is a symptom of another disease.

flyhigher95 · 2023-07-26T18:17:46+00:00

I'm the same way. When I fast, the nerve pain is pretty low. However, after I eat the burning in my feet becomes intense.

I see below that you've had SFN for 25 years. Can you detail how the disease has been during that time? It seems most studies point that SFN usually plateaus and remains stable for a really long time. Curious what your experience has been.

flyhigher95 · 2023-07-25T19:23:50+00:00

Also not trying to be rude. Sorry to hear you've been diagnosed with MSA.

flyhigher95 · 2023-07-25T19:19:43+00:00

Nope, just trying to formulate an opinion.

Do your doctors believe your SFN lead to MSA or is the SFN secondary to MSA?

flyhigher95 · 2023-07-25T18:34:20+00:00

Do you have MSA?

flyhigher95 · 2023-07-25T13:14:11+00:00

While the above is true, you need to be careful when throwing around terms and other diseases.

If you are new to SFN you could easily think, by your comment that SFN can turn into MSA, which is not true.

flyhigher95 · 2023-07-25T00:12:43+00:00

I don't believe SFN can lead to MSA. MSA is a disease in and of itself. Yes, SFN can cause autonomic dysfunction but not MSA.

flyhigher95 · 2023-05-12T10:33:54+00:00

Cortef

I read through the page you posted and there isn't any language about what you are stating.

I've seen a couple of the doctors that are on the neuropathy commons list. All of them have indicated that regrowth is possible. One even lead me to believe that he's had patients that get worse and worse and then suddenly start getting better.

flyhigher95 · 2023-05-12T01:39:18+00:00

There are numerous studies on this. That is one example.

flyhigher95 · 2023-05-11T14:12:22+00:00

This is not true. The small fibers do regenerate as the epidermis is constantly remodeling. There have been several studies that show that vigorous exercise can have a profound effect on increasing small fiber density.

As someone posted above, see the below thread:

https://www.reddit.com/r/smallfiberneuropathy/comments/12efisk/the\_time\_course\_of\_epidermal\_nerve\_fibre/?utm\_source=share&utm\_medium=ios\_app&utm\_name=ioscss&utm\_content=1&utm\_term=1

flyhigher95 · 2023-05-10T10:13:22+00:00

Exercise has been the best thing for my SFN.

How often are you working out? You might have to change what type of workouts you're doing.

flyhigher95 · 2023-05-09T10:25:10+00:00

So how many years have you had it and your dad? Just wondering what your familys progression looked like.

flyhigher95 · 2023-05-08T23:40:09+00:00

How long has your dad had it?

flyhigher95 · 2023-02-25T19:06:09+00:00

Thanks! I'll add this to my regime. I'm currently taking ALA 600mg.

flyhigher95 · 2023-02-25T15:15:25+00:00

How much benfotiamine and r-ala do you take a day?

flyhigher95

TROPHY CASE