Small fiber polynueropathy, often misdiagnosed as FND, a personal story:

[Lady4]

Not my story but one I was given permission to share:

I was originally diagnosed with fibromyalgia, and then later diagnosed with a connective tissue disorder (EDS). My diagnosing geneticist also told me that fibromyalgia was an inaccurate diagnosis, and dropped it. He informed me that I had small fiber polynueropathy.

However, I still use the fibromayalgia diagnosis as I experience allodynia, hyperalgesia, and I passed the fibromyalgia physical evaluation (pain spot test) prior to my EDS diagnosis. I had also been treated with pharmaceutical therapy for fibromyalgia (cymbalta) at the time, and I saw a drastic reduction in symptoms. I personally find both diagnoses are accurate for me given the in depth physical evaluation I received when I was originally diagnosed, and the type of pains I experience that diverge from small fiber polyneuropathy. For me, I definitely think it's a both and thing.

But, I strongly agree with the article that a fibromyalgia diagnosis should be reason to investigate a connective tissue disorder. I, largely, would not be in the state I am today if I had received the connective tissue diagnosis at the same time as the fibromyalgia diagnosis.

A tweet from a Specialist, Zach London:

Saw another patient with sensory neuronopathy who had been misdiagnosed with functional neurological disorder.

[Lady4]

A related article on sensory neuropathy:ncbi.nlm.nih.gov/books/NBK5...

And "bookish" you will notice they highlight B12 deficiency too.

[bookish in reply to Lady4]

Thanks for that. A pity that they focus so much on diabetic signs and treatments, when we can have a number of those causes concurrently. Sjogren's and coeliac folk like most with autoimmunes are commonly depleted in B vitamins, but this will not be the only reason for neuropathy in those people as the conditions directly cause neuropathy too. I have SFN and fibro (and gluten related disorder, possible Sjogren's and others) and am trying to rule out any and all 'reversible' (if found early!) causes, having been left on meds for 14 years which treated symptoms but hid progression. Folate (not folic) was a big one for me but the Bs need looking at together. Cheers

[Lady4 in reply to bookish]

Thanks, I noticed on one article (when researching B12 tests) that the iron reading can affect the B12 levels from recollection.

"Another problem with relying on the MCV to indicate a B12 Deficiency is that if the patient also has an iron deficiency that deficiency will lead to a reduction in the MCV-an iron deficiency and a B12

deficiency will in effect cancel out each

deficiency's effect on the size of the red

blood cell."

Previously low in iron on blood test and had to have supplements but within normal range last time, but it did have this note (see image) regarding different laboratory conditions.

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[bookish in reply to Lady4]

Hi, yes that is very true. Many people with a B12 (or folate) deficiency do not show macrocytosis (and do not have to be anaemic). Iron deficiency (and B6 def.) may show as small red blood cells and B12 or folate def. as large red cells, so you end up with one cancelling out the other and can be microcytic, normocytic or macrocytic. This was part of my problem as my iron had been dire for years and as I was already orally supplementing the B12 I'd obscured all the easy to spot signs without knowing. The vit D is low, the ferritin too low and the active B12 not high enough, I would say from a quick look, personally. The change in lab process seems to be about the vit D but am reading upside down so may be wrong!! Cheers

[210272]

Very interesting and there was an excellent presentation on this topic on YouTube by a MD: Anne Louise Oaklander | Small Fibers, Big Pain || Radcliffe Institute

[Lady4 in reply to 210272]

Just watched that. Their study mentioned 40% have small fibre neuropathy and that was back in 2017. Its a disease and they have treatment yet many go on suffering ...

[210272 in reply to Lady4]

I know and it's heartbreaking. When the 'human construct' (constructed by men) that is PPPD came on to be, one of the first comments I saw on faceache (from someone with MdDS) was 'PPPD is the new Fibro', closely followed by 'I dodged that bullet' (also from someone with MdDS).

[Lady4 in reply to 210272]

Faceache? Sorry the end of your reply completely lost me.

[210272 in reply to Lady4]

Ah sorry, it's my slang term for Facebook and I was referring to the over diagnosis of PPPD which is similar to the over diagnosis of Fibro when people have not had adequate checks for small fibre neuropathy.

[Lady4 in reply to 210272]

I am not keen on it either 😂

[bookish in reply to 210272]

PPPD was a new one to me! Thanks for the warning......

[210272 in reply to bookish]

You're welcome bookish. PPPD is a 'human construct' (constructed by men) and this dx is sometimes given to patients by doctors to discourage further contact from their patients. Not big, not clever and very, very bad medicine.

[bookish in reply to 210272]

Just been reading pn.bmj.com/content/18/1/5 .....good grief. Anything that mentions engrained illness beliefs has me clenching! Vertigo and gait disorders yet not a mention of B12/folate. I can be sure that I'd have had this fastened on me, had it existed. Luckily for me, my finding methylfolate resolved those symptoms to a large extent.

[Lady4 in reply to bookish]

I can't open that tab, whats the title?

[bookish in reply to Lady4]

Sorry, it is a BMJ Practical Neurology piece titled 'Persistent postural-perceptual dizziness (PPPD): a common, characteristic and treatable cause of chronic dizziness' by Popkirov, Staab and Stone.

[Lady4 in reply to 210272]

Yet that is one of the categories mentioned as a sub category of FND on re-active website. No doubt another "label" like Fibro.

[Batty1]

I was diagnosed with Small Fiber Neuropathy a year after losing my thyroid to cancer …. I believe my burning skin sensation is directly related to my thyroid hormone dysfunction…. Once I was properly-ish treated for thyroid issues it has subsided and actually disappears but as soon as my thyroid levels go off back comes the burning skin sensation .

[Lady4 in reply to Batty1]

Thanks for sharing. My son has to have bloods done again as thyroid level was out of range (too high from recollection) but he had a cold bug at the time so could have effected the results, hence rebook.

[Batty1 in reply to Lady4]

Once he has his thyroid test done again post the results on the thyroid site here and watch the magic happen and make sure he gets a complete thyroid panel not just TSH, FT4.

[Lady4 in reply to Batty1]

Magic?

[Batty1 in reply to Lady4]

Yes, they are all very good at helping people who have thyroid issues … “Magic” was just a word I used I didn’t mean they could wave a wand a poof everything's fixed … geeze.

[Lady4 in reply to Batty1]

You mean, they will help. My son hasn't sleep much the last 3+ weeks and I know being in the REM cycle of sleep is important. I think I read it gets rid of excess chemical build up in the brain at while back.

[Batty1 in reply to Lady4]

I sleep soundly and even this hasn’t helped at all with small fiber neuropathy … maybe he has sleep apnea.

[Lady4 in reply to Batty1]

My friend has that. Has to wear a special mask, think snoring wakes her up.

[Batty1 in reply to Lady4]

Its something else to look at especially if he isn’t sleeping.

[Lady4]

He hasn't reported any difficulty breathing, only once at the beginning of the the year when he had flu symptoms. I will get bloods done and see levels but think underactive is more common with sleep problems. He got no sleep the night before last night and a max one hr last night. Plus barely any before.

[Pickle500]

If it's not diabetes then SFN will be B12 deficiency.

The MAJOR problem we have in the medical world is that NO-ONE is studying nutrition and so any gut or nutrition related cause of SFN or indeed any neuropathy remains misunderstood.

Alcohol is another strong reason however poor diet, stress, alcohol, lack of sleep can all take their toll on the lining of the gut and cause leaky gut syndrome, where particles enter the bloodstream from the gut walls and become toxins in the system. And this causes all manner of problems.

The medical world is not up to speed on gut health or nutrition and therefore dismiss Leaky Gut as 'nonsense'.

I walked away from London's most prestigious neurological hospital with an FND diagnosis followed by an 18 month wait to a specialist who told me to reflect on that time and my 'traumas' in childhood and recommended a course of anti-depressants.

The medical system is not fit for purpose I'm afraid.

Test for B12 but if any supplements were taken the test is void.

The best route is to order supplies of Hydroxocobalamin (although there is a world shortage) and self inject every other day until SFN disappears.

And it will.

[Lady4]

I don't think my son has got SFN it was just a post I shared for others.

This is a screenshot from the utube video mentioned above, the Neuro Scientists do know the connection but its not wide spread knowledge for GPs (even though video was 6 yrs ago) etc and at the end of the presentation it said the patients, esp with fibro should request a skin biopsy (in a round about way).

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