Hi! I was diagnosed with "atypical ms" 30+ years ago - I had a lumbar puncture positive for ms but an MRI that was not.

[Graciegirl]

I also have some "functional" symptoms according to my neurologist. Some of the neurological problems are relapsing & remitting & I respond well to methylprednisolone. Has anyone else had a diagnosis of atypical ms with functional symptoms that are so longstanding? My GP is convinced there is an organic cause for all the difficulties I have because the pattern has been the same for so long. Any comments would be v welcome - I feel quite isolated with it all!

[Thirza]

Hi - I was clinically diagnosed with MS 35 years ago and there was no reason in all the years to follow that it wasn't MS as all the symptoms and relapses were typical but for the past few years I have been told I don't have MS and that it is FND. I have been treated as a psychiatric case and not very politely either. I can understand your concerns as they are mine as well . I do not even have the back up of a GP as at our surgery we tend to see a different GP each time. Like you I feel very alone with a very unpleasant list of symptoms.

Take care, Thirza

[trophywife]

I had adx of exacerbating remitting ms from age 17-43.then they said it wasn't.my exacerbations were spring and fall a nd steroids helped.then they decided it wasn't ms.it was ptsd.its been a nightmare.

[kotovasv in reply to trophywife]

What was the rationale behind diagnosing you with FND if they were okay with MS before? How did they explain?

[Graciegirl in reply to kotovasv]

There has never been a convincing explanation because the only consistent doctor has been my GP - over 30 years the neurologists have changed again & again. They are often so sexist, ageist & up their own backside that they want to prove that the symptoms they can't find tests to confirm (yet!) can't possibly be organic so they must be functional. They are not always honest, either. So, what they say to my face & what they say to each other frequently differs. What troubles me the most is the stereotyping - it is not much different from when anything inexplicable was labelled "hysteria". Whatever words are used - the thinking behind them is belittling & dismissive. Thank goodness for websites like this one - solidarity changes lives!

[kotovasv in reply to Graciegirl]

Oh, believe me, I know firsthand what you are talking about, I could sign every word. Through my 10 years of being ill, I heard it all, was humiliated, laughed at, screamed at, saw a lot of lie in my medical records... I hate doctors with all my heart.

[trophywife in reply to kotovasv]

they said my mri was normal.i recently found out 25% of people with ms have a negative mri

[kotovasv in reply to trophywife]

One psychiatrist told me that most probably some day they would find a neurological disease in me...at the autopsy.

[trophywife]

it was bizzare.a few years prior I had a really bad exacerbation.my neurologist wanted to put me on chemo.out of the blue he said it was ptsd.it was after the movements started.go figure

[kotovasv in reply to trophywife]

There is no logic behind their actions. I never had symptoms which would make someone think I have MS, yet each time I go for a consult, I am sent to yet another MRI - only to be congratulated of "having nothing".

[trophywife]

in my experience with the neuro drs ,they don't like to say Ii don't know.they want a test to prove something.it seems really odd because historically the technology has proven time and again that functional diseases become real to neurologists when they have new tech.that shows the disease real.dystonia,.ms,parkinsons,ect.imho it would be much better to say we cant prove what it is with the tests we have now but we can try out some treatments to see wh at helps and we know stress makes every illness worse so lets see what works for you to make things easier on youot and pt can help as well.thats what I think. my sarcastic nature says do urologi st say your penis is fine,you need psychiatric care,does an orth surgeon tell patients . -I removed your leg.you should be happy the infection is gone.your migraines aren't real.......or you.take your care to a mechanic cuz it stalls out on the freeway and he comes out and says all the tests are fine.you ask what about the stalling...aren't you glad the engine is fine.... yes but what about the stalling ....you seem upset.you need to see a psychiatrist....

[kotovasv in reply to trophywife]

Hahaha...how funny - I used just the same comparison with a stalled car last time I received their stupid "congratulations"! And I also compared neurology with other medical specialties in a post somewhere, maybe even at this website. Just take, for example, my husband and my daughter - both have irritable bowel syndrome, and gastros never send them to psychiarists, even as both have exacerbations in response to a stress, and we keep mild herbal tranquilizers at home just for this purpose:-))

[trophywife in reply to kotovasv]

in my previous llifei was a state social worker for people with developmental disabilities.i was asked to go see a mom who was overly anxiou s.i said id go but only if she asked me.she called and said the neurologist said i needed counseling.i went to see her and she said I know theres something wrong with my child but everyone says shes doing great.i took her back to the neurologist and he said she was doing great -I was the problem.i explained I needed to fill out the paperwork.i asked what her daughters disability was .she said they say shes great.her daughter woke up and came out and gave her mom a big hug.i said you never mentioned she had downs syndrome.she said whats that.i said downs syndrome.she said I don't know what that is.do you believe me when I say there is something wrong.no dr had told this poor mom that her daughter had down syndrome.

[kotovasv in reply to trophywife]

Is there a limit to their cruelty? I am shocked...

[scoobie680]

I am no expert..but any physical/ organic condition or illness can also have an element of FND including MS patients..A. neuro could prob tell you what symptoms you have are FND..it's good you have a supportive gp but they are not an expert but equally they should be able to help you see someone who can put this into context..

I had some problems a year ago after suffering optic neuritis ..brain scan was ok..but developed weakness in shoulder during the ON and this caused tears in the rotator cuff..I already use a wheelchair so you can imagine how that wes..things got worse with the arm and hand and my bladder went odd and spasms all over my body..neck pain and weakness until I was admitted to hospital by the physio I was seeing as my symptoms were odd and my speach was affected..I also had nystagmus ..tests came back ok ..all the usual things ruled out..then came the functional diagnosis re arm/ neck/ shoulder..equally they said they couldn't rule out inflammation of the entire spinal cord at cellular level..they eye probs were organic neurological ..what annoyed me was they couldn't quantify which of my symptoms both the ones I was in hospital for and the ones. I had had for many years after a road traffic accident..were FND they couldn't quantify at all..oddly after all the tests were done I was left feeling like some sort of freak..unclassified neurological condition is the best they could come up with. I tired anti seizure drug for neck/ head tremor but no joy and the side affects were crap. they wanted to try me in something else but were prevented due to medico legal restrictions..no idea what they wanted to try me on..!!

after all the tests were done the nursing staff at all levels right up to the ward sister kept referring to me directly and with each other as an MS patient and yet the neuro drs in the early weeks had told me that the tests had not indicated this..how odd ..and a mystery ..it wasn't good to be treated like this..and I was confused but didn't have the strength to challenge anyone..after several weeks on a acute neuro ward I was desecrate to go home but wasn't well enough so had to wait for a neuro rehab bed..finally got there had neuro rehab and improved enough to go home still not back to how I was before and neuro eye probs persist ..I do yoga every day..I work out when I can I go swimmingdon't focus on my symptoms..I have a routine every day..I am positive ???the tremor is back in my hand and weakness in both hands??I am off to see a neuro for a review tomorrow ..I have since moved to the SW and my gp feels a fresh pair of eyes is needed and also to ask if I may benefit from more specialist neuro rehab at a centre in london for. FND..a years waiting list..and 4 wk residential course..but apparently I reached my full potential at the end of last rehab a year ago??so I don't want to take up a place of someone else could benefit more..

sorry my post has got rather long..

do I think I have MS?? I have no idea..and if a patient doesn't meet the clinical criteria then no dx??do the drs have to tell a patient they may have ms but can't clinically dx re tests..?? would they refrain from doing this in a patient with suspected FND? I don't know the answers..lol

am new here

hi all

stay positive ..

[Graciegirl]

Thank you everyone for your replies & sorry it has taken me so long to acknowledge them. I have been in hospital several times since I wrote that post. Strangely, while I was on the neuro ward I was diagnosed with respiratory failure. I am now on oxygen 24/7 & everything has improved. Makes me wonder whether others with neurological problems are short of oxygen? My new neurologist has a v different attitude towards the functional overlay. He says that's the interesting bit & that when they are able to do functional mris he is sure they will show demyelination. It makes such a huge difference to have a neurologist who is proactive and open minded. I wish everyone well. X