From MS diagnosis to FND

[Shar1967]

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

[Hidden]

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

[Shar1967 in reply to Hidden]

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

[Hidden in reply to Shar1967]

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.

[VivienneWaterworth]

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.

[Caprice123 in reply to VivienneWaterworth]

One neurologist and my doctor told me that FND is a fancy term for pyschosomatic illness. I watched Dr Stone and he comes across as being a very anxious person, who tends to stutter.lol. Maybe it's all the hassle he gets from patients, such as myself, incorrectly diagnosed with FND. I shall be writing to him. I do feel sorry for those who are diagnosed with FND and then are denied any treatment, apart from seeing a psychiatrist or physio especially trained in the psychiatric department. Excuse my cynicism about FND, but hope you will understand that I managed to see a very good neurologist, who after a thorough examination, which the first neuro didn't do, diagnosed me with a brain stem dystonia related to my rare Camptocormia condition.

[VivienneWaterworth in reply to Caprice123]

Unfortunately a lot of doctors believe that FND and indeed CD, are all psychosomatic illnesses. I suspect the reason for this is that the DSM IV, the manual that lists all mental health provider numbers for insurance purposes, listed CD under the same heading as psychosomatic illness. Just because two sisters are in the same family, that does not make them one person lol!

There are very significant differences between FND/CD and psychosomatic illnesses. When the DSM committee got together to produce DSM-5, they produced several draft versions.

In the second draft edition, issued about 3 or 4 years ago in December (from memory), the explained that they were very concerned about patients with CD being labelled as Psychosomatic, and therefore freeing the doctors to also use words like fainting, faking, deception, etc to describe patients with CD. They very strongly said that there was absolutely no evidence of people with CD faking any of their symptoms, and doing so was a serious breach of medical responsibility, or something along those lines. They said that up to 1/3 of people with CD do not have any history of trauma or other mental health issues, so labelling CD as a mental health disorder was very dangerous and should not be done

They therefore chose to create a new label, Functional Neurological Symptom Disorder, and they listed CD under that heading.

In the final released copy of DSM 5, they changed it all again, and removed their very strong word about incorrect treatment and diagnoses of CD/FND, and put FND (CD) together, and then stupidly put something similar to psychosomatic illness in the same group. They then created a new heading of 'Somatic disorder', where most of the old Somatoform Disorder groups now appear.

[Tilly64]

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

[Shar1967]

Thank you Tilly xx

[Tilly64 in reply to Shar1967]

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

[Shar1967 in reply to Tilly64]

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

[Shar1967 in reply to Shar1967]

Sorry Tilly xx

[BelC in reply to Shar1967]

This is so weird. My husband was given an MS diagnosis by Mr Yuill in 1989/90. He had scans showing lesions. For 25 yrs he has had relapsing/ remitting with a yr in a wheelchair in 2008. 2 yrs ago a neurologist where we now live diagnosed FND and after a "relapse" in 2015 with neuritis in eyes and not mobile...another neurologist supported FND. Scans are currently clear. My husband was in a bad way feeling no one believed him. Our GP now has both terms on the records.

[Thirza]

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

[Shar1967 in reply to Thirza]

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

[Thirza in reply to Shar1967]

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

[Missclc]

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

[EssEff]

Hey, I know it's been a year and you're probably long gone by now.

I was initially dignosed wth Guillain-Barré syndrome and then later on told it was actually FND, I dont know how you dealt with it for so long. Its been almost a year now and I feel awful. I hate knowing it's me doing this to myself. Everyone says it isn't my fault but it doesn't feel like that.

[patti86]

I am also presenting with all the signs of MS and yet I have no lesions. my scans are inconclusive but no lesions so no MS and now I have this functional gat disorder label....so no more testing & not sure ill get any more answers. My primary ran some tests when the neurologist did not...but even she has stopped. So trust me, We all understand.

Just remember that you are NOT doing this to yourself...it is what it is. your brain is in charge...so try to focus on getting better. Which I know is easier said than done. For me I'm in PT and that seems to be helping- mostly because I am working on increasing my core strength. I also noticed a huge improvement after a dose of 2 weeks on prednisone. coincidence or not? time will tell.

Hang in there.

[DonandLisa]

So sorry but you are not alone.

[Sutta]

Same here ms, then not ms after twenty years. Lesions optic neuritis, unable to empty bladder 10 years of a supra pubic catheter. Now diagnosed with FND and dumped. I’m certain one day this will be classed as a independent neurological condition in its own right without cd. I now just focus on being my best.

You are not alone xx

[Denise1968 in reply to Sutta]

Hi, so you've got lesions and they say it's not Ms? Did the treatment they offered you for Ms improve your symptoms? I'm currently in the process of being diagnosed as just had a second attack. Did the lesions stay the same over the years? X

[Raven8693]

i am going thru the exact same thing right now