Confused

[_confused_]

Hi, It all started with pins and needles down my neck, spine and right side and over time my bones hurt, muscles were weak and felt generally unwell. Doctors said it wasn't my neck or back and prescribed iron and vitamin d tablets. More and more symptoms came and it was when I developed a resting tremor in my right arm that I returned to the doctor who referred me for an mri, which came back normal but then my right leg started to jolt, when I sit or lay resting to the point I couldn't relax. My leg feels weak on standing and my balance is really bad that I fall all over the place if I don't walk slowly. Anyway saw a neurologist yesterday who really didn't ask about my symptoms, or past health and did a quick few checks of which the balance ones, both of which I fell over. I sat through the whole short appointment jolting backwards and forwards and showed him my tremor which at this point was bad , only for him to ask if I was doing it myself which was insulting. I was told that I have fnd and there was nothing they could do and was left confused and perplexed and was left to believe that I have imagined all these symptoms. I may add that up until 3 months prior I was a very happy healthy person who was going to the gym, working and in a very happy marriage with no stress. I feel quite sad that people diagnosed are made to feel this way. My symptoms are bad and the balance is causing problems with my job which I love but I am becoming a liability. I would love to hear from other people who are having similar problems. Thanks Ali

[Hidden]

It's because there are a lot of rude lazy neurologists out there who don't know or are not interested in learning so are delighted to label you FND and then call it psychological.

All my symptoms are physical but I got offered a neuropsychiatrist I declined.

[_confused_ in reply to Hidden]

Hi Amallia,

Yes you are totally right and I sure got one of those awful neurologists that couldn't wait to get me out of the door . Well I will see how I get on and maybe get a second opinion but the one thing I won't have is someone telling me that I am imagining my symtons.

Thank you for your reply

All the best Ali

[sueyard in reply to _confused_]

Sorry to here that my daughter has the same problem she has been unable to do everything for over a year now doctors whant help her she had a lovely little6 year old boy i look after both of them

[englishmumof2]

Hi Ali welcome!

If you've been given diagnosis of fnd in U.K. I'd still ask to see prof Edwards or dr stone for a second opinion as it won't hurt to do that... did they offer you any meds fit any symptoms? I have ssri for my body jolts! Tremors in hands are getting worse so I need to go back! My second attack in U.K. The stroke socialist said I was faking not being able to move my left leg ... so much so he yanked my leg until he made me scream in pain... he walked away very quickly! It is hard but keep on you will find some one to hel

[englishmumof2 in reply to englishmumof2]

See tremors finishing for me... my gp and nurses are good! They listen encouraged me to try meds when I was hitting a brick wall (ps they were right). And I see prof Edwards every 6 months or so and neuropsychologist exert 12-16 weeks.... last time I think I scared him with my increase in symptoms...😀. So use here to ask questions, rant, cry, scream, share advice, share new ideas that's what we're here for 🤗🤗🤗🤗

[nurmihusa in reply to englishmumof2]

I have a technique that I use from time to time when things get very bad and I don't have access to or want to take a chill pill. It's a variation on a yoga exercise that sometimes can short circuit the shaking/crunching/jerking.

So...you tense every single muscle you have any control of. You tense your torso, meaning you won't be able to breathe. Your arms, hands, legs, jaw - whatever. Everything. And hold it for as long as you can. Mebbe five, six seconds? Then relax and breathe.

Sometimes you might need to do it twice or thrice?

I think what it does is consciously interrupt the unconscious, autonomic physical stuff that's happening out of our control. Like slapping someone in movie who's hysterical to break the spell of the hysteria?

Anyway, it seems to work for me. Doesn't make the shaking or crunching go away entirely, but it can significantly lessen the craziness.

[_confused_ in reply to nurmihusa]

Hi nurmihusa

Thank you for your reply and advice. I think I will try what you have said , as I am at a loss as to how to deal with the jolting leg because this is what is making my leg weak and having a knock on effect with the rest of my symptoms. Will let you know how I get on.

It's nice to be on such a caring site, sharing stories and help.

Thanks once again Ali

[_confused_ in reply to englishmumof2]

Hi englishmumof

Thank you for making me feel so welcome and for your help, advice and support, all of which I needed after my appointment. I was incredibly greatful to hear I didn't have the serious diseases but feel that physically that this is just as bad. It has took me a couple of days questioning my sanity but now after numerous research and all of the lovely supportive people on here that it's the neurologists that need more compassion and training in this field. Well I will carry on as I have been and see how things go and possibly get a second opinion, only because he offered no help or support and when I asked if I had any other symptoms what do I do, was told just go and see the doctor . Anyway it feels good to have found this site and be part of fnd community.

Thanks again, and hope you are keeping well.

Ali

[cathys20 in reply to _confused_]

In the beginning almost twenty years ago now, I spent about 2 weeks trying to talk myself into having some mental illness all of sudden that had made me so sick. I mean that is what I was told it was all in my head so it must be. My husband was livid with me telling me stop buying into the lies of the Dr.s who didn;t know you or what they were talking about. I had my own cleaning business, a happy marriage, I was homeschooling my two youngest, I ran from morning to night like an eveready battery. And then one evening out of nowhere this all began. I layed in bed one day saying how can you go out of your head out of nowhere...I didnt want to get out of bed, I cried and cried, begged God to make me not sick, begged Him to heal me, help me, find a psychiatrist that thought my mind had gone awry, I couldn;t even find a Dr. that thought it was in my head. So Dr. bills didn;t get paid cause they said it was pyshological, psychiatrists weren;t getting paid cause they said it was neurological, it was insane the whole situation. Two years in a chair, can't talk, constant seizures, a nightmare. Lost my job, my physical self, I can remember over and over crying I want my life back. All the while my husband searching, looking, trying to find out what the heck I had, he never faultered. Towards the end of the two years he was now asking God to take me home, he could not stand to see me in such pain anymore. And then a Dr. yes a Dr. who said it is not in your head, an internist at first, God sent him to me, started me on an anti-seizre med, Tegretol, and the light went on again, I was able to talk, walk, less seizures, and then diagnosed with an unknown movement disorder. A neurologist that diagnosed levadopa responsive dystonia. Many things have happened since then, but that was the beginning. It is not in your head, but it is. Not that you have a psychological issue, but something broken in the sence that our signals in our brain are not communicating with the rest of our bodies correctly anymore. You ARE NOT ALONE< we are all here in this together. STay strong...God Bless, Cathy

[Hidden in reply to cathys20]

I'm so sorry you went through that.

I grew up with a mentally ill parent so always told my friends who were gym crazy to look after their mental health not just physical.

I feel for you to become mentally ill it's either genetic and can start at a particular age e.g. Males early 20s is when schitzophrenia begins. Or you go through some awful event like a death or assault and become depressed or have anxiety.

You don't just wake up from your happy life with both 'mental health' issues and physical issues all on their own.

I think this just makes docs look like idiots now. They need to stop with this ****.

[_confused_ in reply to cathys20]

Hi cathys20

Wow, I was shocked to hear how this awful disorder has taken over your life the way it has and I'm so glad to hear that the doctors have been able to give you something that gives you some quality of life back again. It's so sad to hear and see so many people suffering with this and although still trying to get my head around it all, am for the moment very grateful to still be able to just about function. My main concern is the problems with my balance, that might be something I need to address with the doctor as I keep falling over so being very careful. I hope you feel better soon and send you all the best and thank you for your help, advice and support. I am so greatful for this site, it is helping me a lot. Take care Ali

[patti86]

I actually would prefer to have a dislike button. Im so sorry you went through all of that. First thing...you need a new neurologist. I have 3 you can have. lol...and let me just re state.....you are NOT doing this to yourself, and a psychological cause is no longer the only reason you develop a functional neurological disorder.

But I get it...I know I told one of my neurologists after he asked if I ever felt disconnected to my body, that if they were going down that psychological path, see that door, I am walking right through it. I have way too much medical happening systemically with evidence based testing to tolerate that line of questions. But welcome to the world of "functional vs organic" medical rollercoaster. the one thing i found when being plopped on this rollercoaster is the way we all look at things is different.

here is a web site I hope helps. neurosymptoms.org/#

Non of this is easy, but hopefully you find a neurologist that has the right training. I am not sure where you are located US or UK but a movement motor neurologist might be a good place to start.

hang in there. we all understand. Patti

[_confused_ in reply to patti86]

Hi patti86

Thank you so much for your reply and help and advice. Well I don't think that I will be seeing another neurologist they way he dispensed of me and told me if I have any other symptoms to see the doctor. It was shocking really that after my symptoms literally changed me over a period of 3 months that to literally be told that it is all in my mind I find a total insult. I rarely go to the doctors and am on no medication and sure as hell don't want to lose my job that I love and have been in for 2 years but my symptoms have been so debilitating that I am a liability at work but I will carry on regardless as they are all very supportive.

Thank you for the advice and link, I have had a look and it's very helpful . I am based in the UK. Hope you are keeping well and coping with your symptoms.

All the best Ali

[Tewa]

Oh Ali....yes, I am having similar problems with similar results. I am so sorry and understand how you are feeling.

I have been ill for almost eight years. Double vision, coordination issues, extreme fatigue, weakness, incontinence, and so on. First diagnosed with MS, then ? ..then 'it's all in your head," even though Mental Health professionals said it was not...then Myasthenia Gravis, then ?..the three years ago FND, CFS/ME. The treatment by the medical professionals, a few exceptions, has been horrible.

The tremors/uncontrollable movements have been consistent for over two months. Recently My PCP sent me to a neuro-surgeon, who said I am not the right specialist. I had questioned this...asking, she is a neuro-surgeon, will she be able to assess these tremors? Was told yes. Now, waiting for a referral to a neurologist as my neuro is out on medical leave. Referral was suppose to be done over a week ago, found out on Friday, not done yet????? Is this not being taken seriously???? I have had Home Health in for four months and cannot shower alone due to being a fall risk.

I, like you Ali, was healthy, happy and had a very active and fulfilling life. Now, I can not do hardly anything. There are so many like us and it is heartbreaking.

I hear you and fully understand how difficult this is for you.

Sending prayers..hope that's ok, and a gentle hug.

[_confused_]

Hi Tewa

Thanks for your lovely reply and so sorry to hear about your experiences too. Isn't it shocking how many of us are in pain and discomfort and yet no one really seems to know how to deal with it other than push people from pillar to post. You really have been messed around and that in itself is not good for your health. It's always the waiting game. I am just so frustrated that I could lose my job over this as I am a liability where I work as like you am unsteady on my feet but it seems to fall on deaf ears. Finding this site and all the lovely people on here has given me a lot more hope than when I got back from the hospital on Friday. My husband wants his happy , healthy wife back. It was only a few months ago he said how bullet proof I was and how I was never ill, think that was somewhat tempting fate.

I hope you manage to get your appointments and answers soon so they can get you back to health. Wishing you lots of luck and best wishes and a gentle hug back to you .