Functionl Neurological Disorder (FND) how many of you with PA have been labelled with this?

I joined the FND forum when the neuro tried to palm me off with this made up diagnosis ( it is a lable not an illness, it turns out it just means they do nto know what you have )

I noticed that a number ofpeople on the forum having been labelled FND almost immidiately after PA diagnosis, being told their neuro symptoms could not possibly be due to B12 deficiency ( against all research stating that it is B12 deficiency)

So I thought I would ask you all here, - have you been told you may have FND? and if so what did they suggest you do about it and did it affect your treatment for Perniciaous Anemia?

I would be really interested to know how many people have been fobbed off like this? Is it related to PA diagnosis - Is it something that is happening recently ( I saw a report stating diagnosis of FND has inceased over 700% in the last 3 years, but it did not mention a correlation to PA - it did not mention PA at all so perhpas we can find a link?)

8 Replies

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  • Hi Mrs_Somerset ,

    Although I have never come across FND, it is and interesting question and it will be interesting to see how many may have been given that diagnosis.

    I have not been diagnosed with FND, but sub acute degeneration of the spinal cord, caused by a prolonged lack of B12. This was by a neurologist some 5 years after I started treatment for B12 def.

    KInd regards,

    Marre.

  • Hi Marre,

    Can I please ask how the neuro cam up with that diagosis?

    I ask because that is what my physio thought was up with me - but the doc said no and did not test for it and I do not think the neuro did either? If you could tell me the tests he did to confirm that diagnosis I might be ablt o know if they were done or not ( I have had a lot of tests and am off for evoked potential next week)

    Thank-you for your help,

    M

  • Hi M,

    I first saw a haematologist who did loads of tests, blood tests and neurological tests such as move toes up and down, stand with feet together eyes shut, arms up, tuning fork etc. She then referred me to neurologist who did more tests and MRI of head to eliminate tumour etc. He did neurological tests , things like can you walk a line, how much do you feel sharp and soft objects on legs and feet, if you can stand upright with both feet together, arms out and eyes shut , reflexes were checked in my case, tuning fork used etc.

    You can read up on these tests in the links at this topic, see:

    pernicious-anaemia-society....

    I did fail a lot of tests, fell off the weighing scales, could not stand with both feet together, or walk a line, my ankle reflexes did not work whilst other reflexes produced jumping joints etc.

    Kind regards,

    Marre.

  • Hi Marre,

    Thank-you for the info.

    I too failed the walking, standing, standing with legs together ( fell over) standing with eyes closed ( started falling over) and cannot put my arms out in front of me - causes too much pain.

    I will have a look at the link you posted too - any info is brilliant as it gives me an idea of what they should be doing :-)

  • I have never had pain..just balance and weak, but we all are different, its best if you read the links in the topic referred to, they will give a lot of detail worth knowing I think. Marre.

  • Based on my experience with GPs and the neurologist, none of them are willing to even consider the fact that all my classical neurological symptoms are due to B12 deficiency, therefore I would imagine that a fair number of uninformed people could be diagnosed with FND. They also seem to think your B12 level needs to be in your boots before you can get symptoms despite lab assay warnings that B12 deficiency can occur at 'normal' levels and research to show the inaccuracy of the current lab test in comparison to the old radioimmunoassay.

    This may a useful thing for PAS to research.

  • Hi Secondchancev,

    I just found a list of symptoms for demyelination 9 as B12 deficiency if left untreated can cause demyelination, (which can lead to neurological issues)

    I have been telling my doc this for ages, since I found out that I had PA, and he says it cannot be so, but I think he has his own reasons for not diagnosing this - it owuld leave him open to admitting negligence on his part. I have just posted it in the PA forum here, it might be useful for you to have a look / print it off / beat your doctor about the head with it, as I intend to do when I see him later this week :-)

    Big Hugs,,

    M

  • Hi Secondchancev,

    I just found a list of symptoms for demyelination (as B12 deficiency if left untreated can cause demyelination, (which can lead to neurological issues)

    I have been telling my doc this for ages, since I found out that I had PA, and he says it cannot be so, but I think he has his own reasons for not diagnosing this - it owuld leave him open to admitting negligence on his part. I have just posted it in the PA forum here, it might be useful for you to have a look / print it off / beat your doctor about the head with it, as I intend to do when I see him later this week :-)

    Big Hugs,,

    M

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