Hi everyone, I’m from Sydney, first post. 53yo male. Interested in your thoughts.

I began to have SFN symptoms in Nov 2021 - burning and numbness in hands and feet. The symptoms waxed and waned and would be mild for weeks. But as they persisted I saw a doctor and neurologist. The neurologist thought SFN after confirming large fibres were ok, and arranged for more detailed testing at a hospital.

It has taken 6 months for that appointment to come through and during this time the symptoms increased in frequency but not severity.

I was recently at the hospital (Aug 2022) and seen by a team of neurologists. They did nerve conduction and a sweat test and I’m waiting for the results.

Since the sweat test however, my symptoms have blown out. I now have burning throughout most of my body, where before it was just hands and feet with occasional light symptoms up my legs.

I saw my general practitioner who felt that the increased symptoms meant the neuropathy was across most of my body and the sustained heat of the sweat test aggravated those nerves.

In the process of trying to figure out a cause. Although my sugars are normal that is being checked in more detail. My iron levels have decreased over the years but I’ve taken supplements and they’re about to be retested. Last B12 was just over 200.

Worthwhile mentioning that I was diagnosed with postural tachycardia syndrome in 2013, which is possibly auto immune. My doctor thinks auto immune is the most likely cause of SFN, as my symptoms started shortly after the second Pfizer vax.

I’ve started to look into what to take for this and ordered PEA and Alpha-lipoic acid.

Have to admit the sudden increase in symptoms has taken its toll on me in the last week. Pain is now waking me up at night and the future doesn’t look bright.

Thanks in advance for any insights and advice.

Hello, You can also explore the useful sticky threads above the PN thread list, explore other threads and try our site search tool for keywords in past posts.

Hi and welcome to NeuroTalk Support Groups.

As JoMar suggested, please check on the information posts at the top of the forum and also in the SubForum as they might be of help to you. There are studies regarding SFN post vaccines that you can find in PubMed.

Regarding your B12 at 200. Please read the post
https://www.neurotalk.org/1090998-post681.html
which is from the main B12 thread here.
Some of the post will not be relevant to you but the part about the numbers is
relevant to us all.

STICKY - The Vitamin B12 Thread:

n.b. Go off your B12 before testing for a few days (I've forgotten if it's 5 or 7?) before testing.

My PN is from a cancer treatment (not the usual Chemotherapy) but I haven't found a doctor yet who even talked to me about my B12 levels or even if there was something to be done about the PN itself. Nothing. Vitamin D is something else that should regularly be checked especially if you have pain.

I am sorry that I can't offer too much in the way of suggestions for relief from the pain. I do use a Magnesium spray that I buy from the chemist. It's not expensive and really helps my feet at times, but not all times.

One word I find applicable to my own neuropathy and I read it here a lot is "flare" or "flares" - triggers that cause an increase in symptoms but later subside. Often flares are food related or medication related. Often it's too difficult to figure it out at all.

At the top of the page here there is the
PN Tips, Resources, Supplements and other treatments Forum There is a lot of information in here.

It would also be worthwhile searching for the autoimmune posts and threads.

I'm sorry you're in so much pain. I understand how that goes but let's hope that your doctors are knowledgeable and helpful and that soon your pain will settle down and you won't feel as hopeless.

Please do get the B12 higher.

Thanks for the info Lara. I supplemented iron earlier in the year and stopped when my levels improved. Ferritin was the main culprit. A friend suggested B12 injections and I’ve asked my doctor for these. I know my Vit D hasn’t been great so I’ll be checking that as well.

Welcome Selenius.

--as the B12 thread will indicate, you can get your B12 levels up more easily with daily sublingual dosing, which avoids the expense and inconvenience of injections; even those with absorption problems can dose with at least 1000mcg/day (1 mg) or more and build B12 stores through even small percentage passive absorption.

That level around 200 is much too low. It may not be the primary culprit for your neuropathy situation, but it is likely contributing to it (and none of us are exempt from being "co-morbid"--having multiple causes for our situations).

I really hope you see this reply, but then again I hope you've recovered and have moved on in life! However, you've most succinctly described the most bizarre experience of my life!

I am a few years older than you. I had a TBI when I fell into a wall/table in my living room 5 years ago.
Ever since, I randomly will feel like I'm going to pass out when I'm walking or going up stairs, pulse zooms to the 150s(near-syncope). Only since the fall though. I started having pins/needles and a sense of vibration in my 4th and 5th digits after the brain injury, and it all faded over time so it was forgotten mostly.

Finally did a Tilt Table test for the near-syncope last January, and when I passed out after the nitro (normal), I woke up and my entire body felt like it was vibrating so much I could almost *hear* it and felt like all of my skin was asleep/itchy... I'd sweat through my clothes. The sweat test was abnormal, but I never heard more about that.
Even after I got home, it was so "loud" I didn't sleep for another 16 hours. It was far more intense and widespread than anything before. I found what your doctor said interesting because that's what it seems like to me but my docs just shrugged.

One cardiologist believed me (he retired ha!), one was quiet and both neurologists have looked at me like that couldn't have changed that fast. Dude, know I'm sitting here crying my eyes out bc you've made me feel sane from 8000 miles and 18 months ago!

More:
I was urgently referredl to neuro, they did a skin biopsy, showed SFN and last week I started topiramate and that's that it seems. Live with it I guess?

Would love to hear more about your story, I am going to look around for your posts.

In any event, thank you for the validation. Means more than you know. Thank you!

[any typos or incoherence are the direct result of topiramate ]

Hi Habu,

I'm not Selenius, and I hope that you'll be hearing from Selenius soon, but I just wanted to say Welcome.

I'm not knowledgeable about TBI and I hang out mostly on the MS forum but I've had a few head wounds over the years and am aware of how severe they can be.

It might be a good idea to ask some questions about that abnormal sweat test, it seems to me--but that's just a thought.