Have any of you been given FND as a possible diagnosis? I had my first appointment today and the neuro threw my GP’s idea of ME/CFS out the window and replaced it with possible MS or FND. She gave me this website link: http://www.neurosymptoms.org I was just wondering about others’ thoughts on this.
I think that website is really, really good. It is extremely informative and matter-of-fact and plain about the fact that FND is emphatically a ‘proper’ condition. So it is also reassuring for anyone who wants confirmation that the docs don’t think they are making this stuff up.
Personally, my symptoms never looked like anything but garden-variety MS - but I would have been glad to find that site if I had needed it.
Alison
Hi Yes was given a provisional FND dx way back at the beginning, before big relapse led to my ms dx. I was pointed to the same website and found it really helpful, it makes a lot of sense. Honestly it did take me a while to get my head round it as I’d never heard of such a thing, also don’t think the doctors (ones I saw anyway) are always very good at explaining it to patients which can make it harder for people to accept. I was just starting to get it, when it got taken off the table. Give it a good read. Lx
the site is great and full of information, my Nuero symptoms have been described as ‘Left arm weakness, progressive neurological dysfunction’ by one Nuero and used on my sicknotes. Another Nuero 's conclusions was that it was a combination of all my illness’s together. Trapped nerves at the top of my spine, Spondilytis lower and cervical, small strokes due to AF and now Ménière’s disease. This really is because of the clear MRI’s, as this has ruled out MS. I am oddly still under Nuero and seeing him in Feb for a review. One thing that has changed for me is most of my symptoms where on my left side but are now moving over to my right arm and hand.
I have read this site before and it was good to re-visit from the link of your other post.
Catherine xx
I’m gradually working my way through the website! I was glad that hubby was there to absorb what the Neuro said as he’s the one who needs to live with me living through this! It is also useful to be able to explain it to other family members. Just the bottom line of ‘my nervous system isn’t working properly’ is so helpful to get people to begin to understand. Has anyone else come across FND?
Hi,
I’ve also been diagnosed with FND by the National Hospital in Queens Square, but I’m convinced I have ms. My ms consultant at St Mary’s is still keeping an eye on me (I’ve even had 7 mri’s!!! All normal). He’s booked me in to have an LP in Jan. My symptoms kicked off 2 1/2 yrs ago - the list is never ending! I’ve gradually gone down hill and from being a sporty person I’m struggling to even walk 15 mins in a row. Its so weird. To look at I look fine! Behind the scenes I’m contantly looking for something to sit on and almost dashing around to find the next seat. I’ve been told FND is a code name for psychosomatic symptoms and I just don’t buy it. When I bend down and touch my toes my arms and legs feel weird. Surely thats physical!? I think the neuros are all puzzled by my symptoms and even my ms neuro admits that some people have to wait for yrs before legions show on the scan. with that in mind its impossible to be convinced its FND. Reiki, have you had an MRI (brain and spinal cord) / LP?
To make matters worse I have to wait until Sept until I’m admitted to the National for treatment for FND. I think I’ll have lost the plot by then!!
Hi Baligirl! Did you have a good look at the website http://www.neurosymptoms.org ? My neurologist seemed to be leaning towards an FND diagnosis. I have my first ever MRI this coming Saturday 4th. I had to change the appointment I was initially given so that I could physically get there…however, this gave me an opportunity to find out what strength of MRI I’m booked for (my local hospital have both a T1.5 and a T3…that’s Tesla, not Terminator…) I was told I’ll be on the T1.5 as its better for spinal MRI imaging. So, even if it comes up clear, I’ll be aware that it might have missed something, so even if I’m given an FND diagnosis I’ll still be left thinking there’s a possibility of ms. Either way, I’m convinced that it is a physical malfunction of some sort. It’s the kind of thing I feel intuitively. Whatever the label, I have to deal with the fluctuating symptoms anyway and I’ve been doing the best I can these past 16 months, so I can hang on a bit longer for an official plan of treatment. Not too much longer though if things get worse!
Hello! sorry you too are having to suffer. That’s great you’re getting a scan of your spine. I’ve also been told the T 1.5 is best for the spine. T 3 for the brain (normally used for trauma patients). I managed to get my brain done on a T3 still nothing is showing which is reassuring!
Yes thanks I’ve seen the neurosymptoms website. Like you i’ve tried to go along with the possibility it could be FN but also feel intuitively there is something up! Its so hard when we can’t rule ms out knowing some people have to wait yrs until things show up. my neuro gives me a scan every 3 - 6 months to see there are no changes.
By the way have you ever been tested for lymes? It can mimic ms. Also are your B12 levels fairly high?
I’ve been having hyberbaric oxygen treatment at an ms charity centre. It really helps my symptoms and people with all sorts of conditions have it. Have you heard of it?
Another tip is log onto the overcomingms website. Prof Jelinek is actually a medic with ms. He gives lots of tips on how to keep ms stable - surely its wise to follow tips (ie. no dairy/no saturated fats/high omega 3) as a precaution in case it is ms!? Also it beneficial for general health so I’m following it.
Hello,
Thats good you’re having another scan. I’ve also been told the T1.5 is best for the spine. T 3 for the brain. I had my brain done on a T3 and nothing still is showing which is +.
Yes thanks I’ve seen the website. Like you though, intuitively I know its ms.
Have you been tested for other things which mimic ms? Lymes disease, B12 deficiency?
I’m booked in for a lumbar puncture to help rule out ms. Have you had one? Its always an option after the scan.
Hi Baligirl, it will be my first ever MRI scan (tomorrow - eep!). I had a wide range of blood tests done by my GP and I believe my B12 is fine. No idea about Lymes disease as no one has mentioned it to me. I carefully asked my neurologist about lumbar punctures and she didn’t seem to think it necessary or as effective as the MRI, so I doubt I’ll get one. As much as my intuition is telling me ‘It’s MS!!’ I also know that we can be easily deceived by ourselves. I was convinced, when pregnant, that I was expecting a boy. Mind you, I also wanted it to be a surprise and so it was when my daughter was born. She’s turned out to be something of a tomboy, though she did enjoy getting all dressed up for New Year’s eve, including clipon earrings, lip gloss and as many bangles as she could manage! So whatever diagnosis I am given and whatever treatment is prescribed, I’ll go along with it as long as it works. If it doesn’t, I’ll simply ask for help again.
Hello again!
Ah I didn’t realise you haven’t yet had a scan. Oh no don’t worry about having an LP at this stage. I’m 2 1/2 yrs with no diagnosis so only now am I having the LP.
Best we don’t compare our situations! Yours may well turn out to be a stress thing so its worth considering the FN disorder:-)
Good tip is to request copies of all test results. Check your B12/vit d levels are at the high of the range - sometimes people get neuro symptoms when they are B12 deficient. Good to get it to about 350/400 - interesting that the US have higher ranges.
Also have you had your thyroid tested? Theres a good website - stop the maddness - which explains the symptoms the thyroid can cause.
Lymes is from a tickbite. You can get if from parks and your own back garden! It can cause neuro symptoms and is commonly overlooked in the UK - blood testing is v inaccurate so v hard to get diagnosed!
Good luck with your scan.
Hello again!
Ah I didn’t realise you haven’t yet had a scan. Oh no don’t worry about having an LP at this stage. I’m 2 1/2 yrs with no diagnosis so only now am I having the LP.
Best we don’t compare our situations! Yours may well turn out to be a stress thing so its worth considering the FN disorder:-)
Good tip is to request copies of all test results. Check your B12/vit d levels are at the high of the range - sometimes people get neuro symptoms when they are B12 deficient. Good to get it to about 350/400 - interesting that the US have higher ranges.
Also have you had your thyroid tested? Theres a good website - stop the maddness - which explains the symptoms the thyroid can cause.
Lymes is from a tickbite. You can get if from parks and your own back garden! It can cause neuro symptoms and is commonly overlooked in the UK - blood testing is v inaccurate so v hard to get diagnosed!
Good luck with your scan.
My MRI came back ‘within normal limits’ and ‘no evidence of ms’ but I have not as yet been told an official diagnosis. I’m waiting to hear back from my neuro as to what happens next. I’ve found the site www.fndhope.org and will continue to ask (firmly) for some sort of treatment!
hi
i think this is what my neuro thinks i have, I have not heard of it but will check out the link.
xx
Neurosymptoms.org seems like a very helpful website.
FND appear to be a useful way of saying that there’s clearly a problem with someone’s neurological functioning, but an unclear cause.
As such, it’s not a comment on anyone’s mental health (which is why doctor’s prefer it to other terms).
And it’s not as perjorative as other terms such as psychosomatic, psychogenic, or hysteria (which is why patients prefer it).
It simply means ‘whatever’s going wrong is not able to be medically unexplained’. For now.
Hi I have had a quick peek at that website and will check it out in its entirety in a little while. Thanks I have also learned a new word today - pejorative!! 
and I have finally learnt how to spell it properly.
I have also been labelled with this, well basically my neuro said my symptoms are all in my brain so hope that’s what he means, however he’s not discharging me and still providing me with all the pain relief I need etc. it’s a frustrating time knowing you could actuLly have something but it doesn’t show on scans x
Thanks everyone. Antipodean, you put that very well! I received a letter from my neuro yesterday just clarifying ‘the plan’. It would have been nice to have been told ‘you have FND.’ Instead, I was told (my scan being ‘within normal limits’) “It is quite common in this scenario that patients experience neurological symptoms in the absence of positive findings on investigation.” Then I was pointed back to the website. I am left thinking, 'did they look hard enough? What if I get worse? What if (and there’s a chance of this) the CBT treatment isn’t available to me where I live? So back to the GP I’ll go. I’ll re-read the website and maybe, instead of trying to make sense of this thing that even neurologists don’t seem to understand, try and accept it and get on as best I can.
Hi,
I have been given the FND diagnosis today - i don’t know how to feel - the way my neurologist told me made me feel I was making my symptoms up as I was told CBT would be recommended and did I accept the offer. My reply was - “I didn’t think I needed CBT”
It’s hard to accept such physical symptoms are caused by the mind. and make me feel people will think i’m a fraud - such as society is.
I was diagnosed with Optic Neuritis 12 months ago then in November had an event where i was admitted to hospital as my right leg just went - had the typical heaviness and weakness / unable to walk. Was admitted to hospital where my neuro said clinically I had MS - very sorry etc etc but a clear MRI the following day that made him retract the diagnosis. I have had to have my car adapted so that I can drive as i cannot lift my foot enough to operate the pedals and can only manage 3 hours at work a day due to the fatigue.
am not sure what to do now - do i accept this is my lot or go for a second opinion? any advice from you lovely guys would be much appreciated.