Newly diagnosed

Hi everyone this is all new to me I've been suffering from tingling fingers and feet and lots of other symptoms which I won't bore you with since jan. and after a normal MRI result I got told on Wednesday that I have FND. Neurologist told me he will refer me to neuropsychologist and then see me in six months and gave me a website to read up on it. Hope this makes sense as I am having a very bad brain fog day today. I'm fed up of people not understanding what I'm going through I may look like I'm well some days but they don't know what my silly body is doing inside. Does anyone else feel frustrated ?

14 Replies

  • Hi Fifivw

    This is typical of how neurology seems to operate these days. A clear scan and it's off to psychology with you, often regardless of other positive neuro /blood tests.There are so many conditions that do not always show on scans that it is impossible to say 'nothing wrong' from a 'clear' scan.Neurologists should and in fact most do know better yet this practice of clear scan = 'all in your head' persists.

    By all means tell me your symptoms and what other tests you have had - I will not be 'bored' !Any head injury or viral episode just before they started ? Angela x

  • Hi angelite thank you for your reply. I've been having tingling fingers which is where it started with weak heavy feeling arms. Went to gp at that stage and they thought maybe carpel tunnel. Then when it started to spread through my legs down to my feet the gp thought otherwise. Had lots of blood tests done and referral to neurologist. In the short space of time I started to get more symptoms of burning sensations going down my arms and legs. Extreme tiredness some days to the point not even able to move out of bed (which is not good when you have two children). Very heavy feeling legs like they had bricks on the end. Struggling with weakness in arms with opening lids cutting apples etc. pain behind my eyes, problems thinking sometimes feeling like brain in a fog, dizziness even when sitting down, ringing/buzzing in ears, shakey hands and last week the most scariest was my legs shaking uncontrollably whilst at work so bad everyone could see. I also have pain shooting down my back when I put my head down.

  • Hi again Fifi,

    You have a lot to contend with by the sounds of things.Any raised white cell count on bloodtests ?Viruses,stomach,flu etc or ear infections before the symptoms started ?x

  • Hi Angela

    All my blood tests were normal I forgot to put in that I had had a chest X-ray which was all fine also. In march I also got sent to A&E by my work where the ed registrar took more blood tests and a urine sample which also were all fine he then sent me home with a letter for gp recommending I saw the neurologist urgent as suspected MS. I then saw the neurologist and had more blood tests which were all fine the in April the MRI scan which as you already know was also normal. But I still have the symptoms I woke up this morning in agony feeling like someone was cutting my right leg open with a hot burning knife and like I was twitching. My tingling fingers are always there as are some of the other symptoms every day. Sorry to go on I'm just so fed up especially because no one can see what's going on inside they just don't seem to understand.

  • Sorry I also meant to put no there was no ear infections or illnesses.

  • Hi Fifi,

    Don't worry ,you are not 'going on' and I very much understand : )

    The body can throw some odd,scary and painful stuff at you when the brain is malfunctioning.My own experience of this ( suspected Encephalitis ) was like a crash course in MS, Parkinsons and Dystonia !

    It doesn't seem like your immune system is actively fighting anything or malfunctioning with normal bloodtests. I assume they have checked your B12 level.

    It is perhaps time to do some sleuthing and see what your symptoms correlate most closely with.I am no expert but I would be checking out , Fibromalgia,M.E. ,Neuropathy etc. and asking if the doctors have ruled these out.

    I found it useful,during the worst of sensory symptoms to tell myself that they were just sensations,not harmful,just a malfunction of signals.It helped me to feel less scared by them.After a while I was able to sit and study them in quite a clinical 'that's interesting' kind of way ! I am no longer shocked by anything my body throws at me-I treat it all calmly and scientifically : )

    Luckily for me the movement disorder and autonomic dysfunction was over in the first few weeks and I am left with much easier symptoms to work with- some spasticity,tinnitus,short term memory and concentration deficits.I still get some buzzing,pain and odd sensations but I seem to have learned how to tone my awareness of it down with time : )

    Try not to be frightened or upset with your body-it is doing the best it can even though it feels like the enemy at times !Work with it,rest when you need to,pace yourself. Relax and make some time for yourself .I would also recommend a multi vitamin/mineral supplement if you do not already take one,to ensure your brain and body is getting what it needs.

    Take care,vent anytime on here and update your progress : )

    Angela x

  • Oh, two more things I forgot ( told you my memory was bad ! )

    The good thing is your neuro wants to see you again in six months so at least they are still interested in your case.I was just signed off and told it could take years to improve !

    A tip for tinnitus - I sleep with either music or TV on low to help mask the noise : )

    Angela x

  • I saw a physciatrist who told me I don't want to be well because I like being the way I am and I could easily get out of wheelchair if I wanted to! Lol

    Lovely folks eh.

    Also just got accused of faking everything in the hope of money and wasting my life.....

    So I do hope you have better experience but feels sometimes u get bumped from place to place.

    I had real bad brain fog and struggled to throw words out and was told to stop it as I'm speaking fine... Didn't feel it in me but then again, they're the professionals and know better about me , than me! ;)

  • Perhaps he mistook you for Andy out of 'Little Britain' ? ! !

    I had some seriously out of order stuff said to me by so called professionals in hospital-suggestions of Munchausens,accusations of throwing myself on the floor and faking Epilepsy when my legs gave way and I went into a motor fit,followed by a condescending 'Stick her in a side room' after they dragged me up and dumped me in a wheelchair.

    One thing I learned with psychologists-at first mine was sympathetic and helpful,suggesting pacing,delegating tasks at home etc.After a couple of pleasant nonjudgemental sessions ,she abruptly changed from good cop to bad cop and loudly and disdainfully attacked me.Lymph nodes and white cells go up and down all the time,you are itching because you are too aware of your body (I had developed excema ! )Your symptoms are all from anxiety etc. Utterly unscientific,nonsensical,devil's advocate type rubbish as if she were trying to break me and get me to believe her or admit it was all a sham ! Perhaps she was hoping her method would 'cure' me and thus gain respect in her field !

    I suspect this is all part of their training-to try the soft approach,gain confidence then convince patient that it is psychological by fair or foul means . After all,you have been referred to them for treatment so they have to find something to treat-it's their job ! I was also warned that I may have to go on anti-depressants.

    I stuck to my guns-got equally forceful where necessary,pointed out the scientific inconsistencies in her arguments,my feeling that it was of physical cause and that I would not consider anti depressants as I was not depressed ! Goodness knows what these drugs may have done to my struggling system at that point - movement disorder had ended and adrenal fatigue/hypotension had set in by then.

    To sum up,many medical professionals seem to behave like an arse when they believe it is in their best interest to do so !

    No one wants to be a neurological disaster, Andy - we didn't plan this ,it is not a fun way to spend time,we don't desire this lifestyle.True cases of faking disability for financial or emotional gain are exceedingly rare but I guess they have to cover all angles.It is hard not to feel upset by these agressive accusations but at the end of the day they are trained this way.

    I am not aware of your story so I will now beetle about through your posts and educate myself : )

    Take care, Angela x

  • I am so sorry to hear that Andy, I will pray for compassion for that Dr. How horrible of him to say to you. I think many of us have been treated unfairly by the medical professionals, causes many to give on them, as well as they on us. Keep searching for a good dr. they are out there. If they don;t understand it, its in your head, seems to be their needs to be an awakening in the medical profession for things yet undiagnosed. Holding you all in prayer, Cathy

  • Hi Angela thank you so much for your kind words and advice I shall try some of your tricks. Hope all is well with yourself.

    Hi Andy I'm so sorry to hear how you are being treated do people really believe that anyone would want to feel like this. I used to be so fit and now I struggle just to walk my children to school I would do anything to be back to my old self how dare these people. It makes me so cross.

    Everyone take care.x

  • Hi my name is Paula I was diagnosed with find last year. I had a accident at work 10 years ago. I had mri scans which showed prolapse disc's in my neck. I also have a tremor in my right arm. I also had X-Rays done on my lower back which a doctor told me the bottom of my spine was crumbling. But now another doctor and physio are telling me my spine Can't crumble. Am in constant pain. I can't walk distance so need to use my scooter or wheelchair. I get around the house with crutches. I also have incontinence problems. I have pain in my back buttocks and left hip and leg. I also get spasms it starts in my head and you feel it moving down your body head ,arm back and then leg. Also my words get mixed up. I know what I want to say but getting it from my head to mouth well it comes out totally different. It doesn't even make sense most of the time. Now the doctors are saying that yes my Mir scan does show problems with my disc's and there is indentation on my spinal cord. That the pain is all in my head. A physio told me yesterday that Thay is nothing wrong with my legs so I don't need my crutches. And also am not breathing properly and because of this am not getting enough carbon monoxide in my body and this can cause a tremor in my body. And also make me feel so unwell. I feel Thay are judging me. Who wants to live like this. I use to be so active Eg walking for hours with the dogs cycling swimming. Did all my own decorating and gardening. And had a job I truly loved. How do Thay truly know we have this fnd the symptoms must cover nearly every part of your body. I have never seen any illness with this amount of symptoms. I don't know who to trust and is it all in my head.

  • Hi Paula and welcome

    I'm sorry to hear what you are going through. When my neurologist diagnosed me with find I kept saying to him so you think it's in my head and I'm making it up he kept reassuring me no you are def having all the symptoms for real and that our brains usually have a route of A to B which goes in a straight line and that something has triggered it to get all tangled up and go off in different directions causing all these symptoms to be happening as nervous system and brain is confused. I don't know if any one else had this explanation or if it is another fob.

  • Have you been checked out for Thoracic outlet syndrome? January 1998 a short report was made regarding focal hand dystonia in a patient with thoracic outlet syndrome. I hope the info may provide a little more help,


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