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functional neurological disorder

Good morning everyone, hope you are all as well as can be expected.

After 6 months of waiting I finally saw the neuro. After doing a few reflex tests she has dx me with functional neurological disorder.

I have not had any other tests other than blood tests.

My symptoms are

Weakness

Ice cold sensations in legs when they feel warm.

Pins and needles in legs, feet, hands and face.

Vertigo

Eye pain

Memory and speeh issues.

Poor balance

Pain in legs, mainly right.

Symptoms worse after a bath.

Tiredness.

I do not have a follow up, she just said she would send a letter to my Dr suggesting different tablets, other than that I just have to treat the symptoms.

While I am please that she has ruled out MS I feel kinda lost and alone now, with no actual cause to get my teeth into a such I feel down at just being left to deal with symptoms. I am barely mobile and any time I try my pain is hoorrendous for a few days. The vertigo really makes things hard too.

Anyone else in this situation? What tablets worked, how did you make yourself better?

Kind Regards

Angie

Hi Angie, your symptoms are very similiar to mine, although mine only normally affect my right side. I did used to get the dizzyness, but for now that seems to have passed by. When I first had symptoms 3 years ago, the docs first thought was that I’d had a TIA mini stroke) however that did eventually get ruled out. After waiting what seemed forever I saw a neurogist who did similiar tests to yours (I had before seeing him had CT,MRI, bloods done,which were all fine) and he diagnosed me with silent migraine and put me on amitripylene which I took for awhile. Like you I wasn’t sure how he came to his decsion,especially when there are lots of ohter things that have the same or similiar symptoms. I have to say i have never been convinced this is what I had/have. After other epsiode which started afew months back (again they thought it was TIA,and now ruled it out) I am at a different hospital with a different consultant (not a neurologist) who has seen me 3 times and is now sending me to another collegue for a second opinion,which I am at present waiting for an appointment. Very frustrating and seems to take along of time. Just a waiting game all the time.

I am still no better.

Nat x

Hi, I am wondering why the neuro didnt send you for an MRI?

I`ve had/got very similar sensations and symptoms as you.

Altogether I`ve had 4 MRIs, 2 LPs, 2 EMGs, VEP and lots of blood tests.

It has taken 14 years for the neuros to finally decide I do not have MS.

My diagnosis is spastic paraparesis/cause unknown.

So I still dont know what has caused my problems.

Takes some dealing with, eh?

Medications I am on are;

baclofen for spasms and spasticity

amitriptyline for nerve pain

quinine for restless legs

Maybe you could discuss the situation with your gp re an MRI and meds.

luv Pollx

Hi Poll, what was it that made them eventually rule out ms??? Will look at spastic paraparesis on the internet as I haven’t heard of that before, maybe fits my symptoms, who knows?

Nat:) x

Thanks :slight_smile:

My GP has been totally useless and I was lucky to get a neuro appointment at all.

I assume that the neuro felt her reflex tests were enough to rule everything else out. Looking around on the net it seems that the DX is one of those that little is known about or it is in the mind.

Just feel a little lost but time will sort that out I guess.

Angie x

Hi Angie xx

I’m no medical expert and I don’t know anything about you other that what you have told us - but if I were you I would INSIST on an MRI - at least - before accepting that diagnosis xxxjenxxx

Hi Angie.

If the neuro literally only did your reflexes, then you should insist on another opinion.

I suspect the neuro may have been less than thorough because MS (and most other neurological conditions) doesn’t cause so many symptoms at once - people with MS who have all your symptoms would normally have developed them over many years. This is why a lot of neuros start thinking “functional” as soon as they see/hear a long list of symptoms.

Functional neurological disorder (FND) is no laughing matter though. The symptoms are very real; it’s just that there is nothing actually wrong with the nervous system to be causing them - like the classic functional condition IBS which causes pain, bowel problems, spasms, etc, and all without any actual problem with the digestive system.

The website www.neurosymptoms.org explains FND really well. It’s worth a look at to see if it might fit with your symptoms.

I hope the new meds help, and that your GP pulls his/her finger out and is more supportive!

Karen x

Hi, ive just read your post and i was also diagnosed with a Dysfunctional Neuro Disorder last year after 2 1/2 years of being ill and the last 2 mris were clear. The last time i saw the consultant that diagnosed me, i was starting to feel better and he said if my symptoms got worse again then i was to see a Neuropsychologist. I fell ill again June last year and its still ongoing. The consultant i saw refused to see me again and that i didnt need any further investigation. In December i saw a neuropsychologist and she could see that there was nothing wrong psychologically and that i was very angry and fustrated with not getting this sorted. I was really lucky that she listened to me and went out of her way to book more mri’s (3rd head mri). I had the results back last week and they had found that there was changes since my last mri. They found something on the right side of my head and in my spinal i had a bulging disc. Im now waiting for an urgent appointment with another neuro consultant.

I really feel that they should of at least given you an MRI scan. I would perhaps try and get your doctor to refer you to see another neuro consultant and push for an MRI or even pay privately.

Jade x

Hi, well the final decision about me not having MS, was because the neuro said there would have been something visible on the various tests by now. Plus my problems aremostly all below the waist. I say mostly, as I have hearing loss in my left ear…no-ojne knows if this is connected to the sp or it would`ve happened no matter what. Hearing aids do not help.

My sp could turn out to be genetic. I wasnt brought up by my birth father and know nothing of his family history. There are no similar problems on my maternal side. I have 2 daughters and 4 grandchildren and i worry for their future health. There is a 50% chance of my offspring developing the condition.

luv Pollx

Thank you for your replies

She decided that it was functional after the reflex tests because she said if it was something else there would have been a break in the comminication or something like that.

I have had symptoms on and off for 20 years, at that time I had an evoke whatever it is which was ok so the doctor gave me a DX of ME. Every few months I would get a bout of extreme tiredness, pain and other sypmtons that came and went which would leave me in bed for a few weeks then they would get better. I just put up with it and never got anymore help, the bouts got closer together and lsted longer over the years. Then 6 months ago it all started up but I cannot seem to get over this one.

I do feel that I should have had an MRI but the neuro is supposed to be the expert.

Angie

Hi

I had a diagnosis of Functional Neurological Syndrome 2 years ago, after losing my legs :confused:

I have a very good GP and I have been treated exactly the same as for MS, I have steroids when I am really bad, but have Amitryptiline, and Pregabalin for the neuro stuff, Citalopram for the depression, and various pain killers for when that sets in

I also have not had an MRI, and doubt very much that I will get one. My sister on the other hand has had several MRI’s and nerve tests and has now been told she has hereditary peripheral neuropathy. . . most of her symptoms are the same as mine, but she has a different GP, so its horses for courses.

When I get my strength up I will ask for another neuro referral. . . I really don’t think it is all in my head though

Hi

I had a diagnosis of Functional Neurological Syndrome 2 years ago, after losing my legs :confused:

I have a very good GP and I have been treated exactly the same as for MS, I have steroids when I am really bad, but have Amitryptiline, and Pregabalin for the neuro stuff, Citalopram for the depression, and various pain killers for when that sets in

I also have not had an MRI, and doubt very much that I will get one. My sister on the other hand has had several MRI’s and nerve tests and has now been told she has hereditary peripheral neuropathy. . . most of her symptoms are the same as mine, but she has a different GP, so its horses for courses.

When I get my strength up I will ask for another neuro referral. . . I really don’t think it is all in my head though

Sorry, but this makes no sense whatsoever - I am really angry on your behalf! As far as I know, steroids are never prescribed for functional neurological disorders and the fact that your GP is dishing out meds when you have a diagnosis of FND and you’ve never even had an MRI sounds absolutely diabolical! Add to that your sister has a diagnosis with the word “hereditary” in it! WhyTF have you not had an MRI?! WhyTF is your GP not getting you seen by someone who can get you properly diagnosed and treated?!

Gobsmacked!

Karen x

After 6 years of being bounced around the NHS, I have finally been sent a letter from my consultant saying I have,

“asymetrical spastic paraparesis”…“based on clinical findings this is a form of primary progressive MS”

So…basicly what I am asking is has anyone else been diagnosed using only clinical findings as all my other tests were negative.

Also would it be alright to put this diagnoses on my ESA forms when I am migrated from Incapacity benefit.

Many thanks

Stu

It’s unusual to be diagnosed by clinical findings only these days, but it does happen.

By the sounds of it, asymmetrical spastic paraparesis is a symptom and PPMS is the diagnosis. It all depends on the wording whether or not it’s an actual diagnosis though, i.e. what else does it say? Maybe check with your GP to be sure?

Kx

Hi Angie,

I know it’s been over a year now but I wondered how you’re feeling and whether there is anything new that’s come up in the meantime…

I’ve just seen a neurologist for the first time today, after having my symptoms for a year and a half and getting worse, and after asking a few questions, checking my reflexes and looking into the back of my eye, she concluded that my symptoms are functional too and I was told to go for counseling and ‘work out what makes me unhappy and change it’ (literally).

My symptoms are:

  • tightness and pouding in my chest (it took the cardiologist a year to do all the tests and conclude that my heart is healthy)

  • burning sensation in my chest when I breath in

  • a feeling that I can’t fill my lungs with air and that there is never enough air in my lungs

  • stabbing pains all over upper back but particularly behind the left shoulder blade (but more increasingly under the right one too) and moving towards the shoulder, sometimes radiating up the left side of my neck. It comes and goes but I have these pains every day

  • weakness and pain in my left arm and increasingly in my right arm too - I can’t tie my hair in one go because of the aching; it’s there when I type, when I wash my dishes, when I carry a mug with coffee - basically whenever there is any physical exertion.

  • weakness and pain in my legs upon any exertion like walking up a hill, kneeling, squating, etc.

  • I think this is one of the most frustrating ones: fatigue. I am tired ALL the time, I wake up in the morning feeling like I’m hangover (and I hardly drink, I might have a pint twice a month), sometimes I am so tired that it makes me cry.

  • dizziness and vertigo - I can’t look at things that move quickly, I can’t move my head too quickly, I can’t look into the distance; all this makes me dizzy and I feel that everything around me is shaky; sometimes it feels that the ground underneath me is shaking

  • blurred vision: at first it was occasional and I went to see an optician last November but they said I had 20/20 vision. Now it’s all the time and everything that’s further than 2 meters is blurred and it hurts my eyes to look into the distance or at bright lights.

  • concentration and memory: my attention span is very bad, it makes me very tired to focus on new things and reading about new things, I’ve never been this forgetful and this unfocused. I do silly things - I once looked for my hair comb for a week and then found it with my kitchen utensils (I’m the only one using it at home)…

I told the neurologist I’m worried about MS and Lyme disease - she completely ignored the Lyme disease, and in terms of MS, she said that if it was MS, she would be able to see someting in the back of my eye and that my reflexes wouldn’t be as they are. She also said that my memory and concentration problems are related to my age (I’m 28) and I can’t expect to have the same attention span and memory as I had when I was at university (4 years ago).

It feels to me that as soon as the doctors find out I was once diagnosed wth depression, they immediately assume that all my problems are related to my mental state. Perhaps they are, but don’t I deserve to have tests to exclude any physical disorders?

I’d love to read what everyone thinks and how you’re feeling Angie…

Thanks and all the best to everyone!

Nina

Hi Nina, if you’re still around! I was finally diagnosed with FND this January, after one visit to a neurologist and a clear MRI (this after a barrage of blood tests and a medication to try and alleviate dizziness. It didn’t. My symptoms are very similar to yours, including the fatigue. In fact I have been diagnosed with Chronic Fatigue Syndrome and am now on a waiting list for CFS services treatment course. This is all they could offer me for FND - the CFS just being one of my symptoms). I’ve found a good website that has a private Facebook group that I’m so glad I joined : FNDhope.org It is a fuzzy diagnosis. There is much general confusion as to whether FND (or Conversion Disorder, an old term but not necessarily the same thing) is physical or psychological. The specialist OT that I saw for my CFS assessment appointment said that it is really not possible to separate the two. I don’t feel like I’ve entirely left limboland. In March I started getting involuntary movements and possible dissociative seizures (not confirmed by a GP yet, I need to address this again). My brain slips into ‘morning stare’ mode but worryingly does it often whilst waiting to cross roads. I’m aware enough to keep rooted until it passes (only lasts seconds) but is a worry. Do join in the FNDhope forum. The webpage is informative too, as is neurosymptoms.org Wishing you all clarity and peace :heart: