Functional Neurological Disorder anyone?

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Functional Neurological Disorder anyone?

Postby RachelO » Sun Sep 08, 2013 11:19 pm

Hi all,

I've not posted on her in a while, I've not been very well. Does anyone on here suffer with a functional neurological disorder?

For me it started at the end of June with a tremor in my right arm. I have been off work ever since. The doctors are useless and don't appear to be much help.

I had to pay £200 to see a neurologist on the 6th of August. Decided to pay to speed up the process and hopefully get back to work. My issues began with the tremor in my arm, then my whole body started jumping and tremor spread to my legs, face and neck. The whole body jumping is worse at night and sometimes I wake up by my shaking (very scary, its taken some getting used to). I seem to have good and bad days. Anyway the neurologist said he doesn't think that there is anything wrong with me that they are just neurological symptoms, but he will sent me for blood tests and MRI even though he's not going to find anything.

I did't have the blood tests until 2nd of September and have not had the results yet and have not heard anything much about the MRI. When I asked the nurse when having my blood tests have I been referred for the MRI as the neurologist as asked my GP to do for him. The nurse took a look and said that I had not been referred :twisted:. After complaining the referred me for an MRI on the 2nd of Sept about a month after they should have. They are just happy to leave me shaking, with muscle spasms and unable to work for all this time. I haven't passed my probationary period in work yet and I'm worried I am going to be laid off. To top it off I have had to come off all my medication, even though I had tremors for about a month last year before I started my meds :( .

Sorry about the rant. I would be interested to know if anyone else has any neurological symptoms.
Life is short, live it. Love is rare, grab it. Anger is bad, dump it. Fear is awful, face it. Memories are sweet, cherish it.” – Unknown
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Re: Functional Neurological Disorder anyone?

Postby cal1164 » Mon Sep 09, 2013 12:05 am

Hi Rachel,
I'm sorry to hear about your tremors. I have had exactly the same issues as you for around 6 months now. I too have had blood tests,that have all come back normal I might add. I also had an MRI scan, which also come back normal. I sometimes wonder if my gp thinks its all in my head, but I know what it feels like to spill my cup of tea over myself, or to try and put my cup down and shake like mad. I also know how it feels to just start dozing off and a part of my body to twitch and disturb me. Every night I have uncontrollable twitching, it drives me nuts sometimes. Also if I try to write with a pen, I find that my hand has a mind of its own and wanders off twitching in the other direction. So I really do hope you get to find out why this is happening to you, it's more than I have found out. They just put it down to my fibro. Good luck x
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Re: Functional Neurological Disorder anyone?

Postby relf1960 » Mon Sep 09, 2013 6:27 am

Hi, I have this, but on a lighter scale. My body jumps every now n then, somedays not at all, some prob 10. It makes me jump out of my skin sometimes, sometimes it's only 1 limb. What I do av tho, is a very annoying finger. I use an iPad, so touch the screen to type n scroll n as a mouse. While writing my finger randomly presses digits I don't want it to, so I'm always editing my words but often the predictive txt cums on n so stupid words end up being sent in my sentences changing the meanings of my conversation etc. but when viewing things it's worse cus I keep tapping on things by accident, constantly taking myself off what I'm looking at n taking me thru to all random things I've clicked on. So av to keep closing them n re finding where I was, often only to do it again. It' drives me mad. Same happens with dialling phone numbers. Grrrrrr
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Re: Functional Neurological Disorder anyone?

Postby denys » Mon Sep 09, 2013 3:29 pm

I have a tremor in my left hand and occasional tremors in other parts, sometimes my body feels as though its shaking but its all internal and isnt visible to anyone, also had blood tests and 3 MRI's nothing found :shock: :shock: :shock:
Denys

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Re: Functional Neurological Disorder anyone?

Postby Karou » Tue Sep 10, 2013 8:18 pm

At some point I've had internal shakes for a week and was sent for blood tests but they found nothing. When I went to see a different doctor he tested my reflexes, some around my face. It responded rather well and I said ok that's great but his reply was no, that one shouldn't even be there.

Turns out I was very very low in magnesium and all because of stress. They prescribed a very high dose for a while and it went.

Might not be the same but maybe it'll help. Good luck, I hope you'll find out why this is happening and can get it sorted soon.
Gentle :hugs: :hugs: , Karou

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Re: Functional Neurological Disorder anyone?

Postby JemmaB88 » Wed Sep 11, 2013 3:31 pm

Hi Rachel.

I have not actually heard of this. I was checked back in Feb for MS, as I was concerned about tremors, internal shakey feeling, numbness in feet and face, visual disturbances and the onset of migraines. My dr was not keen to refer me as he said he feels it is highly unlikely that I would have MS. I first saw him back in July last year about it. I visited the surgery probably as often as once a month after that asking to be seen by a neurologist. I was told it was down to stress, I had just moved in with my then boyfriend and was getting married in September. I agreed to wait until after the wedding and I would go back to see him. I booked an appointment the week after our honeymoon and told him that I was scared now and really wanted to see someone, even just to put my mind at rest. Along with fibro I have been diagnosed with IBS/Colitis (they wouldn't make up their minds), Migraines and also a heart murmur.

In the end, after a full exam with a neurologist and an MRI scan, I was told there is nothing on the scan to suggest anything, and that it was fibro, get on with it basically.

I have just googled this and I was surprised that this was not mentioned to me while I was at the surgery numerous times asking about it. I have the tremor most of the time in my right hand, occasionally in my left hand. My feet become numb and tingly and I get numb patches on my face and upper arms. I have also, in the last 6-12 months noticed a jerking sensation, sometimes when I am starting to fall asleep, but often when I am sat for a while, in the evening or while at work on reception.

I think I will look in to this a little more. It is interesting to know about these things.

Jem x
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Re: Functional Neurological Disorder anyone?

Postby funnybunny » Thu Sep 12, 2013 4:18 pm

I was diagnosed with this too

http://www.neurosymptoms.org/

that website helps explain it a bit better than I could
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Re: Functional Neurological Disorder anyone?

Postby RachelO » Thu Sep 12, 2013 11:23 pm

Thank you all so much for your help. Its nice to know that I'm not alone. I also get the feeling of internal shaking. Soft hugs to you all :grouphug: :grouphug: :grouphug:
Life is short, live it. Love is rare, grab it. Anger is bad, dump it. Fear is awful, face it. Memories are sweet, cherish it.” – Unknown
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Re: Functional Neurological Disorder anyone?

Postby Tel1 » Sun Sep 15, 2013 11:53 pm

Hi There

Saw your post, and although I have posted things about myself in the past, I HAD to reply to yours:)
Yes I have had the same thing as well....it is a very worrying thing to have on top of all the other
fibro symptoms....I told my neurologist about all what you were saying as well , and they said there
is nothing wrong with me ( as such ) apart from the Fibro not making the brain tick in the right way :yikes: :yikes:

I said to him, well if my brain isn't working properly then surely the internal shaking as well as everything else, is it just
in my head then??He said well it kind of is..... They don't really know, that is my answer to it all.... but having read all of the
other peoples symptoms and experiences, it's a wonder we aren't all in mental hospitals with the constant pain, odd feelings
and basically a lot of doctors just look at us, and they must be thinking... yeh yeh yeh,,, anything else dear??

Rachel don't worry, easier said than done, most of us have gone through/going through what you have, it will pass and
something else with rise to the surface with Fibromyalgia and then you will have to worry about that instead of the
internal shaking etc...mine made me feel off balance... the whole of Fibro, is a nightmare because I am sure each of us
feel totally alone within our own bodies that is not visible most of the time.... chin up stay focused and calm. :-)
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Re: Functional Neurological Disorder anyone?

Postby RachelO » Sun Sep 29, 2013 9:37 pm

I saw a second Neuro this week due to the tremors, whole body jumping, balance problems ect. He is not at all happy with the response I got form the last neuro and does not want me waiting any longer for my MRI.

He is going to admit me into hospital within the next two weeks to carry out a number of tests including an MRI, filming my movements at different times, not sure what else.

He says that there could be something very wrong, mentioned swelling on my brain, but also said it might be nothing. So will just have to wait and see and try not to worry to much until i get my results
Life is short, live it. Love is rare, grab it. Anger is bad, dump it. Fear is awful, face it. Memories are sweet, cherish it.” – Unknown
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Re: Functional Neurological Disorder anyone?

Postby relf1960 » Mon Sep 30, 2013 7:52 pm

Karou wrote:At some point I've had internal shakes for a week and was sent for blood tests but they found nothing. When I went to see a different doctor he tested my reflexes, some around my face. It responded rather well and I said ok that's great but his reply was no, that one shouldn't even be there.

Turns out I was very very low in magnesium and all because of stress. They prescribed a very high dose for a while and it went.

Might not be the same but maybe it'll help. Good luck, I hope you'll find out why this is happening and can get it sorted soon.


Hi there. Didn't the lack of magnesium show up in your blood tests? I would have thought that would b one of the things checked in a full blood count. If not, we all need to remember to ask for this. My mother was in hospital a while cus her salts were too low, n it made her appear like a sufferer of alzimers! Her entire personality altered too. She's back to nagging self now there correct though. Lol
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Re: Functional Neurological Disorder anyone?

Postby relf1960 » Mon Sep 30, 2013 8:06 pm

RachelO wrote:I saw a second Neuro this week due to the tremors, whole body jumping, balance problems ect. He is not at all happy with the response I got form the last neuro and does not want me waiting any longer for my MRI.

He is going to admit me into hospital within the next two weeks to carry out a number of tests including an MRI, filming my movements at different times, not sure what else.

He says that there could be something very wrong, mentioned swelling on my brain, but also said it might be nothing. So will just have to wait and see and try not to worry to much until i get my results


Hi Rachael. What a scared doc u have there. Although we all want an MRI scan to tell us our brains ok. Everything I've read shows that every fibro sufferer that has had one has never had a bad 1. If u get something wrong constantly n is slowly getting worse there's more of a worry, but if u get it on n off n not increasing in power I bet its nothing. Let us know how things go. I'm sure they will b fine.

One of my jerky probs is, I'm on my iPad now, n 1 finger type. My finger whilst hovering over the page whilst I'm deciding what to do next, will jerk n click on anything n everything that I don't want to see. It drives me mad. I'm constantly removing myself from links n posts n trying to get back to where I was, before clicking on summat else wrong. It's frustrating although I can see the funny side of it too.
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Re: Functional Neurological Disorder anyone?

Postby Karou » Tue Oct 01, 2013 9:05 am

Hi relf1960,

According to my doctor it was all fine but having said that, I lived abroad so not sure if blood tests are the same everywhere? It's also quite easy for them to say all fine but later you find out it's not.

My friend's daughter had her vitamin d checked because she was very tired all the time. Her doctor said results are ok so she put it down to work, kids and lack of sleep. A year later she was still struggling but went to see someone because of her back. This doctor checked when was the last time she had a blood test and only then did she find out how low her levels were.

Maybe she was unlucky but I guess asking "could it be this or that" doesn't hurt. :-)
Gentle :hugs: :hugs: , Karou

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Re: Functional Neurological Disorder anyone?

Postby bekindtoyou » Wed Oct 02, 2013 8:41 am

Hi everyone having read all of the above it made me wonder if any of you experience involuntary movements when seeing some one else move? Andcan relate it too your eye sight? Strange and hard to describe but an example is if someone shrugs their shoulders when talking to you do you find your shoulders jerk up. I had a really strange one yesterday i was sitting watching TV and there was a man doing a high side kick, my leg jerked really high to the left sort of following what the man was. How mad is that. My fm symptoms have been related strongly to my eyes where the initial problems manifested and then it has slowly moved around my body. Once I have pain somewhere it will visit that area again, I can really map the progression of FM around my body.
Until I was on Amitriptyline I would get crushing squeezing pains in my thighs and jerks when i started to read or concentrate on anything alongside my vision fading, until I could not see the middle part of the subject, the visual disturbance was explained as a symptom of migraine. Following this is pounding in my neck and head and fatigue. As a result of this I have had to put off doing any craft work and sometimes cooking to keep myself functioning at an average and sometimes less than average state.
The Neurologist agreed that it was absolutely possible for the neurological symptoms to be prompted through my eyes. i did not ask why as I was exhausted but I will next time. Recently my legs stiffened gradually from my ankles upwards and over 5 days it went into my back so I could not move for pain, I had prior to this for two weeks decided to throw myself into my art work and use the computer as pain was not so bad and I think? maybe? it is because the Amyt.. has reduced the pain indicators i.e. my legs squeezing so I would stop reading and the FM had got a aggressive hold on my body resulting in me being flat on my back. I find this all quite bizarre but it is very.
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Re: Functional Neurological Disorder anyone?

Postby bekindtoyou » Wed Oct 02, 2013 8:42 am

real...Soz
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