I've recently been diagnosed with RR MS and FND. It's causing me lots of confusion and I really feel frustrated with the whole medical profession because they seem to think that everything prior to my diagnosis of MS is FND and I now feel under scrutiny. My spinal cord MRI also shows that I have MS in my cervical spine ( I think it's at C4 level), with bulging discs in my lumbar spine. Despite having bursitis ( irritation on my right hip). The neurologists insinuates that the pain and atypical gait that I have developed is due to psychological factors !!!!
I've had pain in my back and hip for many years but they say that my difficulties walking are not neurological in origin. Aaaaargh! I never said they were.
I don't know what's worse at the moment : being diagnosed with MS or having the FND tagged onto my diagnosis.
Any one put there with a dual diagnosis? It's hard to trust my body at the best of times and don't know what's real or not!
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I have ME and FND of gait. Both concurrent - developed after a severe migraine and viral infection 5 years ago - I became ill with a particularly bad head, lost the use of my legs, speech and balance went to pot; I have never fully recovered. Symptoms (headaches, vertigo, allergic reactions, sore throats and glands up, muscle weakness and lactic acid on minimal exertion, IBS type problems, sudden onset fatigue, brain fog) flare up then subside over the course of the day/week/month, but my wonky walk is almost always present to some degree. Called 'robotic gait' it is apparently like this because my brain has forgotten how to do walking automatically, so now has to process every movement associated with taking steps. This makes it physically exhausting (automatic walking is actually a repeated process of controlled falling, and uses muscle reflex; my walking is more like doing a leg lift with weights for each step) and mentally exhausting (my brain is trying to monitor the mechanics, balance, as well as process all information about the surroundings, such as where the pavement is in relation to my foot) so the two conditions work to compound each other on a bad day.
I saw Dr Mark Edwards, FND specialist consultant at the National in London who stamped on the psych theory, said it was only likely in cases of acute psych trauma eg shellshock, and that it was more likely to be a viral impact going to the brain, or an electrical problem during the migraine attack which had mucked up its programming. Reprogramming through his 1 week inpatient course was helpful to a degree (I went in walking 19 steps a minute and came out on 26) but the reality is that the ME fatigue really impacts my walking. I would love to be able to follow their advice to 'only walk when my walking pattern is as close to normal as possible' to prevent it becoming hardwired with the wrong information, but if I 'lose my legs' as I call it between the car park and train station I have a whole day ahead with wonky walk and no scooter...because it is parked up at home.
I thought at one point I might have RR MS rather than ME as I went into total remission, except for my cognitive symptoms, for 3 months. Even the walking improved to normal. Then in the course of a morning it all went downhill again. An MRI early this year didn't reveal lesions, so I am stuck with the ME diagnosis, which isn't great as most medics think that is purely psych as well, despite emerging evidence for a biological basis. To top it all the MRI did identify a bi-lobed aneurysm on my opthalmic artery; just what I needed! I am weighing up pros and cons of surgery at the moment.
I hope that has made you feel less alone anyway. All the best.
Things are, like me, plodding along. I have to wait another two months before my appointment with the neurosurgeon which is a bit of a drag. But I had cancelled everything until Christmas because of the uncertainty so I am now thinking I should just enjoy the rest. It isn't often I give myself such an opportunity. If it takes longer than I had hoped to diffuse the brain-bomb, then it does. I can't change that so no point blethering...
Wonky legs and constant fatigue and cognitive dysfunction are just 'the way that things are' for me now after 5 years. I kind of just muddle along and keep praying and smiling. The alternative is too cr@p to countenance.
I hope your rehab gets you some results. Of all the therapies I have been offered physio has been best.
Don't know if this is useful to you, but I've just been reading some of Dr Edwards' published work on FND. As you say, he rejects the idea that FND is caused by emotional trauma, he thinks that isn't true of most cases.
But his view is still that FND is very much psychological. He believes that we develop powerful, false expectations about our own motor abilities, and these work, at an unconscious level, to shape our movements. If our beliefs and expectations can be changed, then we will recover. Dr. E also believes that our psychological issues - anxiety, preoccupation with health, depression, any or all of these - help to build our powerful false expectations in the first place. If we didn't have these issues, things would not have gotten as bad as they did in the first place.
I do think he's one of the more sophisticated people working in this area, and that some of his ideas for treatment (e.g, physical therapy) might be good ones. But I mention his views because doctors in this area do tend to misrepresent what they really think to get us "on board". I suppose they do it for the best of reasons. But I think we have a right to know.
Especially when their view is some kind of untested psycho theory.
Thanks for your input. I spent, as I say, a whole week as an inpatient under Dr E's care, and my neuropsychologist has also been in regular contact with him over the years, and I am quite confident he does not concur with the views of the psych lobby. We have had quite a battering from that quarter in the ME/CFS world here in the UK and I can assure you my experience convinced me that he isn't in that camp.
Also the treatments he uses, including using magnets and a type of biofeedback to monitor subconscious responses to brain stimuli (rather than just CBT or hypnotherapy), are suggestive of a view thay something has gone mechanically wrong...we just dont understand it yet. His main hypotheses for me were, as I said above viral attack in brain tissue or elecrtical disturbance as a result of possibly hemiplegic migraine.
The other examples he gave me during my stay included MS and stomach ulcers, two conditions believed for mamy years to be psychiatric in origin but now known to have biological causes.
I don't know what it is you have read, but I would be highly surprised if he was in with Wessely, White et al. Believe me I have met enough of their comrades in consultations, benefit assessments and GP surgeries over the last 5 years to spot them a mile off, dissembling or not.
Thanks for these Woodie. They don't change my virws on Dr E, in fact they accord very closely with what he and I discussed. I think the key to not misinterpreting where he comes from lies in the comments at the bottom/top of pp 98/99 of the second article: when he talks of beliefs and perceptions he is not talking of ideas but of the brain programming, some 98% of which is autonomous, automatic and sub conscious. The areas of the brain he refers to in his study are all deep brain, primitive sectors over which we have no conscious control. His comments about pychiatry at the close of the article come from a 'rue the day when psychiatry stopped taking notice of neurology and forged itself as a separate (and arguably non-scientific) discipline.
Nothing I have read here causes me any worry about his approach to FND, in my case motor problems of gait. I am still of the view that both he and Jon Stone are some of the few who understand this whole thing.
Thanks for the discussion. Your message prompted me to have a look over the article again carefully. But I'm still feeling the account is very psychological:
(p. 3499 bottom). "There is a significant literature describing the importance of attention in the development and maintenance of somatic symptoms.... Patients with FMSS have a body-focused attentional bias (Robbins and Kirmayer, 1991), and introspective people are more likely to experience somatic symptoms ..... Directing attention towards the self tends to increase reports of physical symptoms.
"Such work has led Brown (2004) to propose that ‘all somatoform conditions with the exception of those involving observable physical phenomena are governed by the same basic mechanism, namely, the repetitive reallocation of high-level attention on to symptoms’. We agree with this proposal but suggest it should encompass symptoms involving observable physical phenomena, such as paralysis or tremor too, as (conscious) attention is clearly very important for their maintenance."
Its the bit about high-level attention which doesn't sit with deep brain primitive sectors.
(p. 3500 bottom). "Negative effects such as anxiety and depression themselves cause somatic symptoms, as well as increasing self-focused attention both through general arousal and ruminations (Vassend, 1989).... Negative affect is very common in patients with personality disorders, who in turn are at a higher risk of developing FMSS "
Still, I do think its pretty sophisticated - much better than what else is out there - and from what you say, this guy is a great doctor too. That has really raised my impression of him a lot.
PS funny, I just worked out both our user names are a play on French words! (de laine, woolly, get it?).
Yes! Currently, I have diagnoses of FND, CFS and JHS (Joint Hypermobility Syndrome for which I'm waiting to get a clinical diagnosis from a rheumatoligist, as JHS is considered to be the same as Ehlers-Danlos Hypermobility type...but there are several types and I need a geneticist to confirm which type as one of them is potentially risky. Oh..and I'm not fully convinced they've ruled out MS for me either (it was the differential diagnosis). It can go hand in hand with EDS.
The simple question 'how are you?' is driving me bonkers because there's no simple answer!
I'm due to see a neurologist and will be asking what *positive* signs of FND there are, otherwise wasn't it just JHS/EDS misdiagnosed as FND?!! My GP thinks I have more going on. It is so hard to sort one thing from another, you have my sympathies.
Hi. I wonde. The hypermobility is just test like with the thumb, bending ... because i used to do split, had lack of muscle under my feet. I used to be more flexible than normal but not like a contorsionist. I think maybe it can be this. My scar are really long to heal and i always had problem with constipation since i'm like ten years old. How the doctor find out?
Hi, Please read other posts on this board. A FND diagnosis should not mean conversion disorder, it functional neurologic disorder. Functional means that science does not know the cause of this malfunction, not that it is made up, or not real, just that they don't know what it is. Don't grill yourself trying to figure out is this real or made up. None of it is something you are causing. Trust your body, no one knows you but you. You don't have to fit into their neat little box.. I am sad the medical community has done this to patients, it is hard enough being ill and then we add to that with the fact we lose faith in them and then it causes us to lose faith in our ownselves. Be encouraged, there are many of us, we know its real. I have both dystonia and fnd, I am fine in my own skin. But even today I have an emg, I know it will set off a dystonic storm and worry how the Dr. will react. It can be very hard. Stay strong, God BLess, Cathy
Thanks for the replies, much appreciated. I hadn't been able to find the response. The longer I'm off work the more frustrated and upset I feel. I'm trying to stay positive but it's all beginning to bring me down.
It's all well and good for medical staff to diagnose these problems but they are not very good at offering any help. I'm sooo disillusioned with the NHS but don't know what I can do about it😕
Oh I could write you a novel. However, I only have 30 minutes until I have to go back to the hospital (had a CT this morning because my bladder stopped working in July and I can't self catheterize so they want to make sure it isn't cancer before inserting a tube into my bladder from my stomach and then I get to pee out my stomach. oh joy!) now i'm heading back to have a spinal tap done to see what shows up there. the neurologist I went to last year diagnosed me with FND. I have all the symptoms of MS and they (all the doctors) are thinking I want it to be MS. how insulting! I have non-enhanced lesions on my brain (enhanced would mean it was active MS I guess) However, my cognitive function has gotten so bad I can't hardly remember what i've told someone, who their name is if I see them again, if I just dealt the hand or if it's my turn (I have family game night at my brothers every saturday.) I had a meltdown last week when I couldn't self catheterize. My brother say he can't emotionally support me, my son doesn't want to help me (like today I have to have a ride home after the spinal tap...they won't let me drive or take a taxi) so I asked my son if his fiancee might be able to and he said she would this once but he didn't want to make a habit out of it. so I told him never mind...I don't want to go down that road if that's how he feels. so i ended up asking my next door neighbor, who is 80, if he would be willing to pick me up this afternoon. I'll have to leave my car at the hospital until I can figure out how to get it. I felt so embarrassed i'm sure he's wondering why my son or brother won't. they come over every weekend to build my deck and Charlie comes out to watch. Emotionally I am all over the place. For years (before the FND diagnosis) my family thought I was faking it. How do you fake memory loss? I lost my 30 year career in computers because I could no long connect the dots (TBI from a car wreck in 2003) And now that I might possibly have MS they are distancing themselves. I feel alone. I live by myself with my little dog Bebe (she is a registered emotional service dog) My oldest daughter (36) who is a nurse, calls me a drama queen. I RARELY reach out to her for emotional support. But I did during my meltdown last week and I just got over her attitude with me so I kicked her to the curb and said until she could be a little more compassionate and treat me better she wasn't allowed in my support group. Thank god that I have my youngest daughter (who lives in Georgia) and I moved to Colorado after my car wreck. she's always there for me to call and i am so thankful for that. but a hug would be nice once in a while. I used to be so outgoing. A leader in my field. now I'm a hermit with no friends because it's hard for me to remember what they said or what I said or am saying and I don't want to become that lady that can't remember crap. so i stay alone. It's embarrassing when I do interact with people I usually start the sentence with I have a brain injury and difficulty thinking of the rights words to say so it takes me a bit of time to get my point across. I just want a frigging diagnosis that explains all these things happening. I don't even know that I addressed what you were asking but I have to go because I need to leave. I'm here for you anytime you need to vent.
Whoah!! Sounds like you're in a bad place right now and I do empathise with you loads. I lived the life of a hermit a few years ago before I even knew what was going on e.g. MS and FND. I knew that I was a bit slow in all domains and regular activities of daily living seemed to wipe me out. Yes I too lost some 'friends' and have family members who don't quite get it. The thing is I don't think they ever will so I don't try to push the issue anymore.
.... and like you I once had to cancel an endoscopy because I didn't have any one to pick me up. The next time the hospital gave me the appointment I just took the investigation without anaesthetic because I still didn't have anyone to pick me up. It wasn't pleasant but it didn't kill me! I kinda forgot about that until you wrote.
I guess what I'm trying to say is... For me part of FND goes with have unsupportive family networks. Also flaky friendships! I find that I need to do as much as I can for myself and always have. So accepting that fact and not trying to get blood from stones is slightly better. It kinda opens up space for letting those people in your life who do and will care. It's sometimes amazing to see what comes back.
Like... I went to a BBQ by myself a few months ago. I happened to remark to a complete stranger that I liked her necklace before we got talking. Well I just got a knock on the door from the postman. Who delivered a card and a small package with the same necklace!! I don't know how she got my address but the fact that she did really helped refresh my faith in mankind and keeps me looking forward and not behind.
Maybe your 80yr neighbour was your little miracle that day??
Please don't let the 'haters' bring you down.
Best wishes and hope today is a good one for you x
Your reply was a very nice thing to wake up to! I've learned a long time ago that my family wasn't going to be part of my support group. But for some strange reason I tried to reach out to them again during this recent onslaught of issues. I knew I shouldn't, I knew what feedback would happen and it did. The definition of insane "when you keep doing the same thing and expect a different result" lol Yes, my neighbor was my miracle yesterday. My LP went great. All that worry and fear and having it turn out awesome. The nurse hugged me a couple of times and I just fell apart. I'm a big hugger and hadn't had one in awhile. It was such a simple gesture but it meant so much.
How awesome your story. you are a warrior (that's how I see myself) to have a procedure without anesthesia is amazing. I don't know that I could do that.
And how wonderful your experience from going to the BBQ! I know that angels show up in our life when we least expect it and fill a need. I know I must open myself up to life and move forward. Though i've become introverted, when i'm around my new neighbors they are such great people. I am blessed to be where I am at. I'm typically an upbeat, positive person. I see where the negative energy of all these experiences at one time has made me lose track of what's important. Taking care of me. Now that the LP is over and I am just waiting for the results of the CT for cancer and the LP for MS. There is nothing more I can do so i'm going to let it go and let it be. Thank you for taking the time to write.
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