From MS diagnosis to FND

Hi,

Feeling confused, lost, and lonely.

I was diagnosed with MS back in 1996, to now be told it is FND! I feel no different, though now feel that I am just going mad and have I imagined all the symptoms, weakness and fatigue in the past? Have I brought these symptoms on myself?

Please can anyone help me to understand a little what is going on, because the sites are confusing? I am classed as being disabled, because limited in what I can do, Is this still the case?

I have tried and tried for years to get on 'as normal', though no matter how I try, fall in a heap.

Any replies would be really appreciated.

Sharon x

13 Replies

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  • My heart goes out to you xx

    I was taken down the route of M S too, back in 2006. MRI did not show lesions so as I have Artrial Fibrillation it was confirmed as TIA's. Yet Nuero says my Nuerological symtoms are non organic and pointed me to FND too, I am also completely deaf in one ear and he did confirm this was a blood clot but did not put in writing. Neurology can leaves totally confused.

    All I can say is believe in yourself, you know your own body and be gentle on yourself too.

    Take care :)

  • Thank you Poppy, that means a lot.

    I also have AF having had two clots from lack of movement.

    Take care of yourself also and will keep you posted xx

  • Wow that's a coincidence you have AF too, the forum on here for AF is very active, I still can't decide about ablation yet.

    Yes keep me posted and good luck. My Nuero is at Preston.

    :)

  • Never let anyone ever tell you that you have imagined the symptoms or that they are fake. That's not the way FND works. Dr Stone, leading neurologist on this subject, likens it to a storm inside the brain, like the software gets scrambled, or doesn’t work very well. FND is not a hardware problem so MRIs won't show anything.

    Check out Dr Stone's website, neurosymptoms.org also check out FNDHope.org - there are links to an online video of Dr Stone talking about it, and about positive signs to use to diagnose FND rather than it being the absence of positive MRIs, EEGs etc.

  • Hi Sharron,

    I have all MS symptoms and neurologists always start off thinking I have ms, people in the street ask if I have ms, my local private Physio thinks I have ms, but after over six years now I still don't hav an official diagnosis. It goes from FND to progressive myelopathy then to medically undiagnosed. Very confusing.

    It must be very hard for you to be told it's MS then not. The fact is you still have the same symptoms, they have not changed (I presume). It is not in our heads. You are still classed as disabled.

    Personally I think that one day they will link FND to MS anyway.

    Just try and think positively about it. You are still the same, diagnosis change or not. I still go on the MS support sites too.

    As I say, we know more than these doctors do I think lol. X x

  • Thank you Tilly xx

  • I saw my Neuro Physio today at the hospital and spoke about you (I hope you don't mind?). I told her that you had MS but now they have changed your diagnosis to FND. She found that hard to believe. She said you can have FND with MS but she had never heard of an MS diagnosis being taken away. She asked me to ask you how you were first diagnosed with MS? Did you have MRIs and a lumbar puncture? Was it a consultant or your doctor that diagnosed you? She found it very odd. X x

  • Hi Tully,

    No I don't mind. I was finally diagnosed with MS in 1996, after a relapse and in rehabilitation for weeks and left in a wheelchair. I have had several clear MRI's and all other clear, though a Neurologist Dr Yuill diagnosed MS on history of lapses etc and I was put on Betaferon.

    So so confused, lost so much with diagnosis, though then learnt to live with it, to be told it's FND, really doesn't help.

    Hope this gives you a little insight.

    Take care

    Sharon xx

  • Sorry Tilly xx

  • I was given a clinical diagnosis of MS in 1988 and had all the back of neuro nurse, physio and MS Society. I was so thankful for the backup as I was working full time and was on my own with two young children. The diagnosis was changed to FND following an MRI in 2007. As you probably know there is little backup or respect for those of us with the FND label. At first I was so upset but now I am resigned to the fact that my symptoms are not taken seriously any more. I have to wear AFOs because of foot drop and ankle instability. I have to make an appointment each year to see the orthotist but neurology and the eye clinic do not offer any further appointments. Close family (cousins) have been given the diagnosis of MS and fibromyalgia. They are content with that as they do not want to confront the idea that we might be passing some hereditary neuropathy to future generations. x

  • Hi Thirza,

    Thank you for your reply. I still think it sucks, happy to not have MS, though as you say no help when the symptoms are still there! What area do you live in?

    Sharon x

  • Hi Sharon, that's the problem ....there is no support and even relatives think its a lesser problem but as you say the symptoms haven't changed, its just a a label that few people have heard of, even health professionals ( G.P , orthotist, physio and podiatrist ) have asked me what it is ! I don't even think it is the correct label in my case x

  • Sharon

    U are not alone bless u I know how u feel , I said to my neuro in August I fee, like a freak nooone understands Somitisation which they originally said but now thro self teach and her saying it is this fnd , I also have nead and other health problems , I have started therapy with mental health and his is helping digging all the trauma out , I have also set up a self help group on Facebook to help others and me , doing tarots etc , it's a difficult journey for us all much love and be strong

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