FND diagnosis

[Lowbattry03]

my 15 year old is being diagnosed with Functional neurological disorder FND for short, she has been collapsing with non epileptic seizures. Does anyone know of any medical papers/ studies/ test that surgest a link between B12 and FND? As the more I read about FND the more it sounds like a B12 issue.

[Jillymo]

My Neurologist tried to label me with FND ! Due to my having numerous autoimmune conditions none of my consultants have acknowledged FND !

I Googled 'not read' but found a couple of articals you might like to sift through. If I were you I would keep an open mind and keep questioning or ask for a second opinion,,,,,,,,,,

What vitamin deficiency causes functional neurological disorder?

Vitamin B12 (Cobalamin) deficiency is a well-known cause of central and peripheral nervous system dysfunction, including sensorimotor peripheral neuropathy. Methylmalonate CoA mutase and homocysteine methyltransferase are cobalamin dependent enzymes.

jnnp.bmj.com/content/88/Sup...

pmc.ncbi.nlm.nih.gov/articl...

Maybe you could request a trial of B12 injections to see if your daughter improves. Have they checked her B12, Folate, Iron and such like to rule out a B12 deficiency or PA ? Whats her diet like, is she getting enough nutrition? Be vigilent.

I hope you find some answer's to what is going on with this young lass.

[wedgewood in reply to Jillymo]

Really helpful message Jillymo . 🥇💐

[Lowbattry03 in reply to Jillymo]

Thank you Jillymo,

In the year my daughter was born my B12 was at 220ngl, it went up to 410ngll in November 2023 and then I started self injecting and it’s made a remarkable impact on my numerous symptoms. No idea what current levels are.

My daughters. B12 was also in the 400ngl area in 2023 so I put her on B12 liquid as PA runs in the family. And she had symptoms that matched mine and my mother who has diagnosed PA.

Her B12 then went up to 1500ngl in Dec 2024 but I was not questioned by the GP other than to ask if I was supplementing her. So don’t think they will listen if I suggested she may need B12, as never been low /deficient using guidelines set by NHS, but I do wonder if she is not absorbing it even though it’s in her blood. She is on a variety of Supplements to support her and has a good diet though as a teenager she sometimes skips the odd meal- not enough to explain her symptoms.

I am looking for information about how the body does not get enough energy as feel her FND seziours symptoms are triggered by lack of energy and I know that B12 relates to energy, I am also looking into adrenal health as she has low cortisol levels but not enough to be diagnosed with Addisons disease, but not high enough to be conclusively normal. And from what I am reading this is also an energy issue. I am trying to find any information that may explain and help me support her better. Especially know my mums neurologist is also suggesting her B12 symptoms may be FND in nature.

I am also worried about her other neurological symptoms such as blurt vision, muscle weakness to the point the she has periods where she cannot stand /walk, etc as her symptoms are getting worse as both mine and my mothers are improving on the injections. The more Inreas about all the various issues related to FND the more it sounds like B12 so there must be a study somewhere to compare how many patients with B12 deficiency also have FND?

Thank you for the link and if anyone has anymore signposting they can give I would be most grateful or any advise on what I can do to help her please.

Thank you

[Jillymo]

Blurred vision is classic of a B12 deficiency albeit my Neurologist had no knowledge of this. Wrong diagnosis is common..........

theb12society.com/common-mi...

theb12society.com/common-mi...

jnnp.bmj.com/content/88/Sup...

If PA run's in your family then it is highly likely your daughter is suffering the same. You could ask for a second opinion.

Lets assume your Daughter has PA . If she is given sublingal B12 she is likely not to absorb and in need of injections. It amazes me how difficult it can be to get PA diagnosed yet at present FND is diagnosed frequently ! Has your daughter been refered to an FND specialist ? If not request that she is seen so that she gets a firm unbiased diagnosis.

The more we read the ammunition we have.

P.s Are you aware there is a FND forum on Health Unlocked ? Somebody on there might have some more info with regard a study !

[Lowbattry03 in reply to Jillymo]

thank you Jillymo,

I will ask as it’s just a general paediatrician who is diagnosing her and I will look up the FND forum, thank you again

[Jillymo in reply to Lowbattry03]

There are a lot of flaws within the diagnosis of FND ! It's a complicated illness to get your head around, I was simply given a web address to look up and read about it.

The most important thing is to treat your daughters deficiency's. You could always do some private blood testing if you thought applicable.

Good luck, I do hope you can get some help with getting your daughter up and running again.