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RRMS new Neuro says functional

Hi

I was told I had functional until neuro saw I had not had an mri even with multiple neuro admissions. MRI showed lesions in ms pattern and then I had eventually an RRMS diagnosis. I am now with a new neuro who now says symptoms are functional again.

This includes eye problems which two neuro opthalmist have said were MS related. New Neuro says I have functional eye.

I have also had multiple Bell’s palsy both sides for 18 years. He says there is no sign of Bell’s palsy.

is it normal to swap between functional and organic multiple times even after diagnosis?

Thanks

Hi what does functional mean? And organic? Please explain, these are new terms to me x

Google tells me:

“Functional Neurological Disorders (FND’s) is the name given for symptoms in the body which appear to be caused by problems in the nervous system but which are not caused by a physical neurological disease or disorder.”

I think Organic must mean the opposite i.e. symptoms where there is a physical neurological problem?

In which case your new neurologists conclusions don’t seem to make sense?! You have MRI evidence of lesions so how can he conclude that there is no physical neurological issue?

If it were me I would ask him to explain properly whether and why he disagreed with the RRMS diagnosis. And if I didn’t get an explanation that made sense of it all, then I would consider getting a second opinion perhaps?

Hope you find some answers x

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I don’t understand any of the post I’m afraid.

OK you cannot have functional neurological disorder if you have POSITIVE tests. Nope. It doesnt work that way so whoever is telling you functional is rubbish… My neurologist told me that himself. The idea of functional is that you have neurological symptoms but nothing showing on tests so its functional…disorder.

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Hi Joanne,

A neurologist told me that I could not have MS because I was “too old” (I was 55). He said that, in his opinion, that I had a “functional disease”. I asked him, “Does that mean psychosomatic?” He replied, “Sort of”.

He really didn’t want to talk to me about it, which was strange. But he promptly sent me off to see a psychiatrist. After an hour of questions and answers the psychiatrist announced, “You’re not depressed.” and I went back to the neurologist.

After a 18 months, with no let up with my symptoms, a lumbar puncture and MRI he finally told me I had MS.

I now know that what he should have said was PPMS.

Best wishes,

John

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Thank you!

I am just off phone with GP. She said the neuro was not saying I do not have MS, he was saying I have MS and some Functional. Functional can become organic (signs and symptoms of ms)

Previous neuro explained Functional and organic as:

Organic …is when we say we have a symptoms and they can see signs of MS. Either through tests or MRI.

Functional…we have symptoms yet they cannot see signs. She gave migraine as an example. Try telling someone with a migraine that it’s in their imagination!

Unfortunately, I have read and heard Drs taking of sending people to psychiatrist who have functional. So I think the medical profession is confused!!!

I naively thought once I had a diagnosis I keep it. YET I should have known better… I have inflammatory arthritis, because it’s a less common type than Rheumatoid arthritis it took 10 years to diagnosis. The first time I got as far as a rheumatologist he diagnosed me straight away. 4 years later I moved and it took years for new rheumy to accept my diagnosis!

Basically in all my adult life I have had a health condition but I spent most of that time being treated as a hypercondriac.

ironically when neuro first said functional I was so happy. After the damage I have in my joints because of a delay in diagnosis of arthritis. I was happy that the neuro signs did not cause damage to my body.

Many thanks for letting me rant and sharing your battles xx

I am 52. They talk rubbish eh! I have lesions in ms patterns and I have lumber puncture bands. If I had depression it’s because of fights with Drs! Sorry you ended up seeing a psychiatrist! Even more sorry to hear you have PPMS!

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I went along with the psychiatrist appointment only because if I didn’t they’d probably discharge me.

After about 50 minutes of fairly predicable questions probing my personal life and relationships he asked me some Q’s which seemed to be probing for psychosis or a similar problem.

Eventually when he asked, "Do you hear voices on the radio talking about you?"

I snapped back, "Not often enough."

And that ended the interview.

Regards,

John

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OK, so the key thing the GP seems to have said is that you do have MS after all.

Whatever else may be going on (according to the neurologist) that might be causing problems that look like MS too, but that aren’t currently showing up on the scans, the underlying cold hard fact is that you have MS. That is rarely good news, but in your rather bizarre situation, I can see why it might feel like quite a relief! Poor you, being pitched into such a confusing picture. Might be worth considering a transfer to a neurologist who speaks human being as a first language? Yours sounds a bit wanting in that regard.

Alison

Unfortunately where I live we have only one ms neuro and no one likes him. Since he sent my letter I have heard something similar has happened to others. He is arrogant and ignores what his colleagues say.

None of us want MS but after the long journey to diagnosis (4. Years) I didn’t expect to still be told I’m still functional.

i will have to put up and shut up and see what happens next.

many thanks

Joanne

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Hopefully they won’t send me to a psychiatrist until I actually need one! That may be because of the confusion of diagnosis! Previous neuro said my mental health is good. I work in the third sector supporting people with mental health problems, so apparently I have lots of coping strategies. Will be ironic if I end up with one!!

You must have been fuming being asked those questions!!

Have they not realised that functional leads to an organic diagnosis? They are so arragant!!!