Forum

FND not MS?

Hi,

Found this site after searching for help as upset by diagnosis from the neurologist this week.

Firstly, I’ve been having the following symptoms for nearly 4 years now but they have been getting worse over the last 18 months;

Balance issues when turning or first standing
Tremor in arm
Weakness in legs and arms
Coordination in hand - difficulty writing some days or doing up buttons
Memory issues - can remember things from years ago but not recent
Extreme tiredness

My GP referred me to the neurologist and after seeing her on Monday she has diagnosed me with FND. Seems like she came to this conclusion after finding that I have had past issues with stress and depression, all of which I can say there was a trigger for, and also finding that my Mother has a history of depression too. Her words were ‘this is common for people with mental health issues, especially those with family history of mental health problems’.
After looking on the FND website I have found that my symptoms are on there but there is no listing of extreme tiredness.

I don’t know where to go from here as I feel that they are missing something and the more I read about my symptoms the more they compare with early MS but feel like because of my history with stress and depression I am just being labelled. I have been told before when I had pains in my feet, apparently that was stress but after being in pain for years and pushing more it was found I had arthritis.

Just worried that the more I push the more they will just say it’s all in my head.

Any advise would be much appreciated.

Thanks

Hi Honeybea,

I’m currently in between MS or FND as a diagnosis and having read up and had FND explained to me by a neurologist and was told that it definitely wasn’t in my head. It was explained to me as the nervous system is intact, but the signals from the brain either aren’t being sent or being muddled and not sent / received correctly.

I’m waiting for results of a lumbar puncture to come back after MRI scans of my brain and spine and a nerve conduction test - have you had any of these tests done yet? I was told that I can’t be diagnosed with either until the neurologist has completed tests. Eg, neither MS or FND can be diagnosed by just ruling out other things.

I started off with being diagnosed with arthritis about 5 or 6 years ago, yet it’s taken me this long to get this far after always having a niggling little thought that the arthritis wasn’t quite right and there was more than the arthritis symptoms there, so it’s well worth pushing for more answers.

It is hard to push for more answers and will probably take a while to do, but worth doing even if for peace of mind.

3 Likes

You go and see another neurologist. HOW DARE this one just flip you off.

Let me tell you a story a true one.
I was 16 years for diagnosis right. My neuro has been amazing with me, but at one point was banging his head as my disease course wasnt making any sense to him. I had lots of proof that there was something neuro going and in essence could give me a differential diagnosis of MS but he wasnt happy as something was missing. I said to him should i try for a second opinion would that help. (on another note when he finally diagnosed me with progressive MS, he said he had learnt a lot about how MS isnt just one suits all size. I was the first person he had seen with PPMS. as its quite rare.

so it was agreed and he recommended me to another neuro in the same hospital that i went to see, cost me money as i went private.

Now this guy seeme pleasant enough listened as they do. He said he hadnt got my notes yet but after talking to me he decided i had FND.

YEP. FND.

so ok, letter went back to my original neuro who fell over laughing. well not literally. 2 weeks later i got a letter of this guy. It more or less said.

sorry i have had your notes and on reflection I cannot offer you a diagnosis of FND as you have too many positive findings on your tests which exclude this. I wish you well for the future. blah blah.

Now see you cant diagnose FND unless you have discounted all the tests.

BUT I WILL SAY THIS. I did say to him i dont care what it is i just want a diagnsosis of something. Now if he told me i had FND i could have worked with it, and even read up about going to special therepy workshop to stay and work it through.

But it wasnt to be. 2 years later i finally got my diagnosis of MS after my 2nd big VEP test came back positive again for MS and worsening lesions.

FND is classed as a rare disease.

General Discussion

Functional neurological disorder (FND) is a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals, rather than a structural disease process such as multiple sclerosis or stroke. FND can encompass a wide variety of neurological symptoms, such as limb weakness or seizures.

FND is a condition at the interface between the specialties of neurology and psychiatry. Conventional tests such as MRI brain scans and EEGs are usually normal in patients with FND. This had led, historically, to the condition being relatively neglected by both clinicians and researchers. However, it is now established that FND is a common cause of disability and distress, which may overlap with other problems such as chronic pain and fatigue.

I have sent you the link as i am not sure we can on here.

THIS NEURO you saw well i have no words which is odd for me lol.

Hello honeybea

Welcome to the forum. I’m really sorry that you’ve been patronised by this doctor and not tested thoroughly.

I agree with the other respondents. FND, just like any other neurological diagnosis needs proper testing. OK, back 40 years ago there were no MRIs. Often the only tools a neurologist had were his/her physical examinations. But now it just seems wrong to diagnose you without MRI testing.

Unless the neurologist concerned has some special powers that enable him/her to see right through your skull and into the brain without such unnecessary machines as MRIs. In which case s/he should be immediately cloned and a copy sent to all hospitals.

I don’t know if this is the link sent to you by CC, What Is FND - FND Hope International It’s quite informative.

Obviously we can’t suggest you have MS, FND, or any other disease / diagnosis. We’re no more magical than your neurologist!

But I do hope you can get some more useful help.

Sue

Hi guys,

Thank you so much for your replies.

This is in fact the second neurologist I have seen. I first saw one 2 years ago when my symptoms started to worry me. Again I was told that my issues were down to stress. I was given a brain scan as my Mother had a brain tumour a few years previous so feel like this was the only thing being looked at. I was discharged from the clinic after the first appointment!

The current neurosurgeon has said she will do another MRI on the brain but has already told me it will be no different to the first, even though my GP has said there are different types of scans that look for different things.
To be told I have balance issues because I think about it too much… well what can I say to that! The weakness in my limbs was tested and again apparently I thinking about that too. After research online it’s the hoover test?
Sent away and told to get CBT to find the underlying cause of my stress and depression!! Waiting to see if I will actually get an appointment for an MRI or not.

I’m finding everyday life such a struggle at the moment, some days I feel so sick and ill and unable to eat but the next day I could be fine.
I’m only 42 and know I shouldn’t be feeling like this but to get anyone to listen is a nightmare because everything is put down to stress and depression due to issues with this in the past.
My new GP seems understanding but when she gets the letter from the neurologist I think she will stop listening just like all the others.

Do you think I should speak to my GP now or wait to see what the letter says from the neurologist first?

speak now. the point is when will neurologists learn not all MS lesions are on the brain, in actual fact i was told for PPMS they are usually found in the spine where mine mostly were. Its not just about an MRI there are a few other things too.

I had MRI, 2 VEPS (WHICH got my diagnosis), a LP, and numerous and on going tests to do with neuro, all were positive for something going on neurological wise.

OK just ASSUME you have FND. You have to play it cagey as otherwise they do label you. FND now can be helped you can go away there is a great clinic in Bristol and they do all kinds of things to help. Now one of my on line friends bit like you decided to accept the label and she went to the one in Bristol. After her stay they told her she didnt have FND, and she was retested for other things, it took a few more years but she was finally told she had MS.

We are all stressed and depressed lol. I have friends who are more so then I am without MS.

I will say this. I had something bugging me from my childhood, (nothing to do with my MS ok), and i finally paid to see a lady who just sat and listened to me for a few weeks, and finally the thing that was worrying me became clear and I was able to put it to rest. It was amazing how she managed to bring it forward so i could deal with it. THIS HAS NOTHING to do with me having MS but because i was at home all day i thought it was time i faced it.

Did it make my MS any better no. But i felt more at ease.

Balance issues are a bummer and dangerous too. I remember one of the tests. close your eyes and stand still, and i fell into my neurologist lol. I simply cannot close my eyes without feeling as though i want to fall. this is why having a shower is dangerous for me, as when i firsted started with my journey, i would have a shower and close my eyes to wash my hair and hit the shower screen.

i had no idea why i was doing that until much much later.

anyway talk to your GP be open and honest. Also be open to the fact it might be FND. it is a neurological problem its not made up, people are wired wrong. It can be sorted. Its disgusting that even in this day and age, they are putting it down to mental health. they need retraining. xxx

I agree with Crazy_Chick - keep on pushing for answers.

I’m still pushing as I was told when discharged from hospital that the doctors weren’t sure what it was (FND or MS), but they were very adamant that I wasn’t imagining it, which put my mind at rest enough to start to go through the process accept that there is something wrong even if it’s not been given a name yet.

For ages I was starting to think that my stupid hobble, flickering eye, walking into door frames and a general inability to do things like hold a cup without dropping it or even type properly / at all, was all in my imagination and I should be able to snap out of it.

Was just a big relief initially to know that someone recognised that something was wrong.

Keep on pushing - I have from an initial diagnosis of arthritis and all the tests that involved to actually get to the stage now has taken some work and complaining, but it needs to be done until you get someone who recognises that there is something there. :slight_smile:

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Thank you Crazy_Chick.

I have read so much over the last couple of days about FND and think maybe it could just be that but another side of me says there hasn’t been enough tests to rule out MS first, especially when all the neurologist would refer to is my past mental health and the mental health of my Mother when I was a child.

I have had CBT in the past to deal with issues I had at the time and this has helped to deal with those but don’t feel that there is anything really bothering me at the moment apart from feeling unwell.
At the end of the day who’s life and work isn’t stressful at times, medical professionals can’t but everything down to stress and mental health, which is what they seem to do with me. Heard so many times from GP’s ‘why didn’t you come to see us sooner’, well I did but you just put it down to my mental health! This is something that worries me now as if I haven’t been diagnosed right then I could be missing out on valuable treatment.

I’m currently waiting for the letter to arrive to say I have been discharged from the clinic once again!

x

if you get FND as diagnosis then ask to go to the special clinics. They will then deal with you properly. It could be FND but thats an illness not imagination, and can be helped. BUT if they decide you dont have FND and it is neuro they will then refer you on.

I GET so frustrated with mental health. They say we shouldnt be silent so we speak out then for the rest of our lives we end up with only mental health problems… yeh right sure.

Life is stressful lol.

write a diary of things, only the ones that really bother you. Also when did all this start could there have been a trigger? I know mine was my father dying in 1997. Things started not long after that. I would go to work and walk into doors i had more bruises then you can imagine, i would fall asleep at my desk, days i could drive because i couldnt feel my left leg or foot. Shooting nerve pains, dropping things my car keys were on the floor more times then not, i used to collect ceramics from car boots, and quite often when i was putting them away they would end up smashed.

I have had all the odd things slowly they increased the UTI stopped a holiday, no more baths i would get stuck, my leg and mobility slowly got worse i could barely walk round a car boot, it was like walking with a concrete cast on my leg, until 11 september 2006 I woke up and couldnt get out of bed. and 2016 finally diagnosed. so i never gave up. I knew something was wrong but have to say never thought of MS. I was teaching a student who had MS she was diagnosed 8 years and was in a wheelchair, no pain just couldnt walk or function so i just assumed all people with MS were like that.

so YOU know something is wrong. fight for your rights but always be open to possibilities, the point is you want to know what is wrong so you can at least try and fix it. xx