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

[Dislancas69 in reply to Lowbattry03]

after reading all your messages it’s really comforting to know we are trying to stand together ..how I don’t know but there’s others that do I’m hoping…my daughters late 30s having endless trouble with all similar symptoms to (FND) coming on fast over past 6 months ..her life put on hold …this is reason I’ve initially went as I thought maybe there’s a connection between all our symptoms and I started looking into family members .PA diagnosis all very similar aswel

… her b12 was I think to be really low on serum test 170 and mine mid range .. they have said she has a folate deficiency they are still not rushing to give her injections (I am finding this hard) her gp is testing for other things meanwhile she’s really ill

[Lowbattry03 in reply to Dislancas69]

Folate does affect B12, she does not need GP to put her on folate suppliments , she can do that herself, maybe once they are up the B12 will work better. No expert, but a finding that suppliments help, it’s just knowing wich one’s and on what amount. Good luck to you both, you will get there, as will we.

[charks in reply to Lowbattry03]

I had blurred vision which was sorted out within 3 days of taking B12. I couldn't believe it. But a neurologist told me that it was quite common for many B12D symptoms to resolve quite quickly once B12 levels rise.

The blurred vision wasn't my only symptom. Four years ago I crashed, had an 'episode' and was unconscious for 30 minutes. When I came round I couldn't walk or talk properly. To cut a long story short I only got better because I watched a video about B12D and realised I had it. My GP didn't have a clue and only gave me a pernicious anaemia test to shut me up.

As you are probably coming to understand B12D is vastly misunderstood. Most people on this forum have had to resort to treating themselves.

[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.

[Sleepybunny]

Hi,

Welcome to the forum.

I suspect many on here have a FND diagnosis or similar in their notes...

It can be complicated...I was told my symptoms were psychosomatic, FND, MUPS (medically unexplained symptoms), hypochondria etc when some such as splits in my tongue were clearly not. I was very angry about these diagnoses for years.

Being older with many years to think about what happened, I now think that the immense stress I went through trying to get B12 deficiency diagnosed probably triggered some symptoms that were psychosomatic.

This website has lots of info on FND.

neurosymptoms.org/en/

I think there is quite an overlap with symptoms of B12 deficiency.

I also wonder if B12 deficiency can indirectly cause FND.

Anxiety and depression are common symptom of B12 deficiency and I think these are risk factors for developing FND.

Having FND diagnosis or similar diagnoses can make it very difficult to get doctors to consider other possibilities.

Has your daughter got any clearly visible symptoms that suggest possible B12 deficiency eg sore, inflamed tongue, mouth ulcers etc?

Search online for "B12 deficiency mouth symptoms".

I'm very sorry to hear about the challenges your daughter is facing.

Misdiagnosis of B12 deficiency as other conditions

b12info.com/misdiagnosis/

Blog post about being symptomatic for B12 deficiency with normal range serum B12.

b12info.com/your-serum-b12-...

B12 deficiency symptoms lists

I used PAS list below and added extra symptoms at the bottom of the list.

pernicious-anaemia-society....

b12info.com/signs-and-sympt...

theb12society.com/signs-and...

Thread about tests for PA and B12 deficiency

healthunlocked.com/pasoc/po...

B12 deficiency in children/young adults

b12info.com/children/

PAS (Pernicious Anaemia Society) has leaflets on juvenile PA.

pernicious-anaemia-society....

PAS (Pernicious Anaemia Society)

If you suspect PA (Pernicious Anaemia) is a possibility, have you considered joining PAS?

Parents sometimes join on behalf of children. PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

Both PA and coeliac disease are auto-immune conditions that can lead to B12 deficiency.

Coeliac UK have good articles on diagnosis.

coeliac.org.uk/information-...

I believe you mentioned the possibility of ADHD on another thread.

I read that people with ADHD can have low levels of dopamine, a neurotransmitter.

B12 is a co-factor in the production of dopamine.

I'm not medically trained but I think it's possible that low levels of B12 could cause ADHD type symptoms due to their effect on dopamine production.

I left some very detailed replies in the threads below eg

causes and symptoms

suggestions of UK B12 documents to read

B12 websites to look at

links to help those struggling to get diagnosis/adequate treatment for B12 deficiency.

Some links may have details that could be upsetting to read so you may want to have a supportive friend or family member read through these with you.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

Patient Safety

healthunlocked.com/pasoc/po...

Is this the tip of the iceberg?

healthunlocked.com/pasoc/po....

[Cherylclaire Forum Support in reply to Sleepybunny]

Re. clearly visible symptoms:

Take a few photos and date them, because if you get sent to a consultant, it is useful for them to see some sort of timeline of symptoms and what they look like at worst.

Plus you can almost guarantee that all visible symptoms will choose the appointment date to disappear for the day !

[Lowbattry03]

thank you so much.

[Dislancas69]

Unfortunately I feel I’m asking similar questions as you have…I have a FND diagnosis …I’m new to this site but have discovered so many things …I personally have family members with diagnosed P.A. not that my gp is really seeing this i feels like he’s just humoring me

My ADHD has been with me my whole life I am on a N.H.S./private waiting list approx 22 months ..I have only started on the path of diagnosis because my children and grandchildren are showing similar traits, adhd has been quite a blessing through out my life and not held me back until recent years, but I think it maybe the thing that helps push me on….it’s has previously been my super power

I’m trying not to sound neurotic at my gp (this is my issue to get across how I am without him keep asking me am I depressed or this is how FND is ) Im searching for light at end of tunnel ) but I am at a stage of some days unable to do basic looking after myself definitely not walking ,spasms and a whole range of other symptoms .. absolutely no energy ..my recent visit to gp ended with FND was stated as my problem at top of my blood test form even though i was enquiring after possible P.A.

I’m at present waiting for test results back for homosycteine …as my instrinsic factor antibody results came back abnormal ..but my gp saying they are satisfactory normal…as I have read he is allowed to put my test results to fit my diagnosis..and he is genuinely looking pleased with my results a few are abnormal (I am not ) surly abnormal is for a reason…i am actually concerned but am unsure how to go about it ..research on this wonderful forum has helped so much …

Important in my research there is a difference between and I need a active b12 test rather than a serum b12 as this will show b12 that can be utilized in my body …as I may have lots in my body but only in storage never being able to utilize and benefit me …I am trying to source this privately as I’m sure my doctors will not add this

This seems like maybe one step closer to possible b12 deficiency…im not expecting b12 to be my answer but what if it is

but after researching it seems if I’m labelled FND ..or if they picked me to have one of the different historical medical diagnosis names with similar symptoms with also no specific tests to prove u have it…..

It’s starting to feel like my guess could be as good as there’s…..on some days I think maybe I have to go along with him as to not rock his boat so to speak…but that’s just not me so I don’t n sound like a neurotic hypochondriac ….but I think i have something else either vitamin or a intolerance of some description

It seems (in my personal opinion and only mine ) …this is a blanket cover to stop looking into what may be happening in my body …after reading people go on to discover its vital vitamins they are missing or they haven’t asked for the right tests or forgot to say the right symptoms because it could be a allergy something your body really cannot tolerate …I’m hoping with my symptoms I’m not moving on to new symptoms because my older ones have not been diagnosed…

some days I’m empowered others falling apart still all with no energy to do life .Research is all I have and am going to push forward until I have my own personal diagnosis…

Sorry if this is slightly to much info …

I think all of us are here together and are looking in the right direction

the people on this forum genuinely feel like friends they are kind considerate ….you are not alone please ask anything…. people on here will send you in the right direction

[Lowbattry03 in reply to Dislancas69]

Thank you

[Sleepybunny]

Just wondered if you'd searched forum posts here using terms such as

parent

daughter

child

teenager

student

as it might show threads started by someone in a similar situation.

Click on "Posts" tab at top left of screen on computer. Just above title of this post.

[Melstarz]

I was diagnosed with pernicious anemia right before being diagnosed with FND. I also have had gastroparesis for over 10 years and ALWAYS knew I did not absorb for some reasons the doctors said they couldn't explain....did they find the answer...no. now 15 years later I'm disabled...100% believe their failure to diagnosis the cause of my absorption issues and to properly treat specifically my B12 anemia and Iron has resulted in permanent nerve damage (there is no test for_but what can be explained by a diagnosis of functional neurological disorder) medical guidelines know that at least 30% of patients with B12 levels under 400 can have neuropsychiatric symptoms...severe and often misdiagnosed as dementia or bipolar etc.... yet the blood test for B12 will show a normal range of 200-1100 in some cases the patients symptoms and medical history is supposed to also be considered. For example, since I have gastroparesis I am unable to absorb B12 through food and require injections to live...most people will hold enough B12 without getting any supplementation for 2-5 years. People that do not absorb properly often due to an underlying issue like gastroparesis or cancer or a blood disorder etc... the B12 levels will drop rapidly until injections are given..it's a very serious problem that many doctors neglect. This is especially serious in woman!!! B12 and iron work together so if you do not treat the B12 and you menstrate and lose blood each month you will eventually not have enough iron either ..this will prevent you blood from getting oxygen to all the organs and tissues in your body causing well functional problems throughout.... If I could afford the schooling I would have been a Dr....

[Lowbattry03]

thank you- I do feel there is a link and have her on tablets and liquid B12 she is improving, fingers crossed long will this continue

[BeachArt]

I saw a neurologist who wanted to diagnose me with FND. This was after my old GP wanted to diagnose me with fibromyalgia. I would not accept either of these diagnoses as I knew they were incorrect. My mother has PA, and all my symptoms were screaming B12d/PA. I was lucky to find another GP who agreed to a trial of injections. They were a game changer, a life saver. 8 years later I still self inject every 3 days. I am, for the most part, symptom free, and I lead a happy, and active life. If I had just accepted the 'professionals' diagnosis of fibromyalgia and FND I would be wheelchair bound, and merely existing. Good luck x