New member - SFN seeking help
 

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.

B12
 

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. :Tip-Hat:

And--
 

--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).

Welcome, selenius!

Sorry I can't offer anything very helpful about SFN but I think it's entirely possible that the heat from the recent sweat test may have caused your symptoms to get worse. Some of these neurological flareups do calm down but it often takes far more time than you think it should.

If you can wait it out a bit longer, you might be pleasantly surprised and find that you're feeling better. I hope so.

Thanks. My doctor told me it could be a few weeks before it (maybe) calms down. It shocked me that I went from occasional symptoms to full blown in one afternoon.

Thanks Glenn. I’ve kicked off the B12 dosing after getting my bloods done Monday. As you say, it may not be the cause, but it won’t hurt to get the levels up.

Please let us know how you are doing.
I personally wouldn't have the injections at the doctor but would go with the Methycobalamin B12 that we can get here in Australia OTC these days. It actually wasn't that long ago we couldn't buy it here and I was having to import it from the US at some expense but now it's available. You have a baseline test result now, so that in the future you can re-test.