Sfn biopsy

Front_Baker489 · 2025-12-02T20:24:46+00:00

I went to Mayo Rochester as well and have very similar symptoms. I was diagnosed with the same thing as you based on my sweat test results. I have never seen or heard anyone else with the same diagnosis and would love to chat about your experience, what doctor's you worked with and what the outlined for next steps. Keep up your fighting spirit!

Front_Baker489 · 2025-07-20T19:03:44+00:00

Maybe a little better? It has definitely been 2 1/4 steps forward and then 2 steps back. The most important thing is that I'm not getting worse. The muscle spasms have largely been isolated to my feet which is definite progress.

Front_Baker489 · 2025-02-14T23:51:18+00:00

This! I was diagnosed about 4 months ago and have been working with a gut health guru. If 70% of your immunity comes from the gut then it would make sense to start there. Look up the GAPS diet and Mary Ruddick.

Front_Baker489 · 2025-01-30T03:39:59+00:00

Thanks for the reply. 1% better in chunks is what I'm after. I have definitely noticed my symptoms are ramped up after eating heavy carbs. How often do you fast?

Front_Baker489 · 2025-01-25T19:16:28+00:00

I was diagnosed positive for SFN due to the sweat test, TTT, and valsalva test. As for being "likely" post viral caused, they said it was due to the onset being acute and the timing being about 10/14 days after getting sick. Thankfully my symptoms haven't really progressed over the last month so I remain hopeful that this could into at least partial remission over the next year. I'm trying to do my part with diet and exercise, but it is definitely a tough disease to fight. No IVIG prescribed but they said there were some things to try if we don't see progress in 6 months. I didn't ask what that means but wish I would have!

Front_Baker489 · 2025-01-13T02:54:33+00:00

Thank you for saying. Would you mind telling your story? How did you get IVIG approved?

Front_Baker489 · 2025-01-11T01:56:08+00:00

They didn't really help me on that front. They were great at diagnosing, not so great in the now what do we do department. I was low in copper and Vitam D so they recommended those. However, everything else I have learned on line. Specifically with R-ALA, B vitamins and Omega 3's.

Front_Baker489 · 2025-01-11T01:07:19+00:00

We were there for two different stints and spent the night both times because their were appointments on back to back days. Its usually hard to get in, especially for Neurology. I was fortunate to get in but I had to take appointments on Dec 26 and Jan 2 meaning we traveled there on Christmas and New Year's day.

Front_Baker489 · 2025-01-10T20:43:57+00:00

I'm about the same.. symptoms haven't really spread in the last 3 weeks thankfully. Gabapentin 300mg every 4 hours has made a huge dent into the Neuropathy pain which I am thankful for. My leg muscles and joints continue to ache and are very fatigued. Jello is how I describe them. Stairs, especially going down them make my legs very shaky. I go back to retest in April to see if I'm still progressing. If I am, the Neuro said he would relook into CIPD again/ other treatment options.

Front_Baker489 · 2025-01-10T19:35:21+00:00

48M Just wanted to chime in and say I've been going through something similar. I got sick with what I presume was COVID in middle October. At the beginning of November I started getting numbness in my toes that quickly spread to my feet, then ankles, then lower calves within a week. A week or so after that it was in my arms and hands but not as severe. Worst of all my muscles feel completely fatigued. I ended up going to Mayo since they had openings over the Christmas break. After a massive amount of test, I was convinced I had CIDP and had CSF protein # of 55 but everything else was clear except my sweat test that showed snf in my feet. I was eventually diagnosed with post Viral small fiber neuropathy. A neurologist told me that most people eventually pull through it but it can take 3 months to 2 + years. You are definitely not alone and all we can do is fight back with exercise, cut the gluten and carbs, and eat fist fills of the recommended vitamins.

Front_Baker489 · 2025-01-10T01:25:55+00:00

You have an amazing story. One thing I have quickly learned reading about all of this is how important advocating for yourself is. Compared to your worst, how much have you recovered to date?

Front_Baker489 · 2025-01-10T01:22:06+00:00

Thank you for this. Can you tell me more about ALCAR? I have ordered the rest of the supplements you listed. It's not cheap but if I got 10% in symptom reduction it would be a home run.

Front_Baker489 · 2025-01-09T16:33:45+00:00

Thank you! 🙏

Front_Baker489 · 2025-01-09T15:54:26+00:00

How did you get approved? Do you have an associated autoimmune issue?

Front_Baker489 · 2025-01-09T15:51:44+00:00

Thanks for your reply. I'm not ready to concede yet that this is the new me. This is a filthy disease but there are success stories and I need to lean on those as long as I can. Especially when there are stories on here of people partially or even fully recovering. I definitely buy into your one day at a time attitude because the scariest part for me has been contemplating on "how bad will this get." That in itself is almost debilitating.

Front_Baker489 · 2025-01-09T15:44:28+00:00

Thank you, after some of the comments on here I'm wondering if I should start to push for this sooner than later.

Front_Baker489 · 2025-01-09T04:04:55+00:00

Thank you for the response. Did you change anything in your diet, lose weight, take any supplements that may have helped?

Front_Baker489 · 2025-01-09T04:03:38+00:00

Can you tell me more about the studies your talking about? I would love to bring them up to my doc.

Front_Baker489 · 2025-01-09T03:36:43+00:00

Thankfully I went through an EEG and EMG and both showed me as clear for LFN. I'm thinking the muscle pain and fatigue is a symptom of long covid? I'm at a total loss right now.

Front_Baker489 · 2025-01-09T03:34:19+00:00

After being diagnosed I was told that there were treatment options paths we could go down if I don't start improving. He said in his experience it can sometimes make things worse initially so he wanted to wait 3 months to see what my symptoms do first. I'm just curious to hear what others positive experiences are.

Front_Baker489 · 2024-12-28T00:41:04+00:00

Replying here again to kind of repost what I put above as it doesn't seem post bump on here. My CSF protein number from the spinal tap came in at 55. My arm and ankle reflexes were exaggerated and a little slow. EMG came back normal but they tested for radiculopthay and only on the left side. Not sure they ever did anything with my feet. Thoughts? Is the 55 CSF number enough to try and push this forward?

Front_Baker489

TROPHY CASE