So confused with this diagnosis

hi, i was diagnosed with FND last month and really cant understand it and find it very confusing. The neurologist first diagnosed drop foot and whole left leg weakness and left arm weakness. Since i suffered with athritis of neck and spine for many years he thought i had a myleopathy. During the last year i have had many scans and tests that were ok. I then started having problems with hands and fingers on both hands which fingers were locked and curled and i couldn't do much. I had an emg which showed carpel tunnel syndrome on both hands and the doctor who done the test said he could see something wrong in muscles in upper arm. when i saw my neurologist he told me there was nothing wrong with the results and the doctor who did the test cannot diagnose whats wrong. it was at this point his whole manner changed and he said he thinks its FND but will refer me to another neurologist for a second opinion to check if he is right. where does this leave me?i dont know what to think. has this happened to anyone else?

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  • This is basically what has happened to most of us. Lots of tests and attention and as soon as the Neurologist says FND ........nothing. I was told to go home and read the FND website and that would give all the information I needed? He did write to my Dr to prescribe Amitriptyline which has helped to dull down some of the twitches etc and sleep I sleep like a log now. I went to GP last week with some new symptoms and I asked her if they were linked and she admitted she knows very little about FND, so referring me back to Neurologist but I don't hold my breath for much information.

    I feel like now I have my Label I am sorted!! NOT :(

  • Yup!

    Many years ago,I had been ill for years..

    and then the publicity about M.E came out -which fitted what had been going on with me.

    Doctors had not been able to tell me what was wrong with me,so we took the article to the doctor,and asked if I could possibly have M.E

    "sounds like a classic case" he said.

    - And that was that!......

    So I went on with the relapsing and remitting,just getting on with it. (I didnt go out to work,which is why this was possible)

    Finally 3 years ago,after "it" suddenly woke up,and with lots of horrible things added...

    I said " right, now you are retired...

    nows the time to try to finally get to the bottom of this!

    After seeing many different specialists,I went to see an MS specialising Neurologist.

    Who said I hadnt got MS:)

    but that it was FND - and told me to read the website!

    Hey Ho!

    I mean a lot of it fitted....

    you know,there were a lot of my symptoms on the list (seems to be ever expanding?)

    but......

    And none of the doctors have even *heard* of FND!:(

    So, apart from them telling me I have FND..

    "Labelling" me...

    I'm no further forward!

    - except one thing!

    I no longer feel so alone!

    As (unfortunately) I know that there are a great many other people,with similar problems.

    I have a question.

    Can any of you link the onset of things with recently having a Tetanus jab?

    Cos when I was well enough to look back,(years ago) the onset of my M.E or whatever,seemed to happen after Tetanus jabs -and got worse after the next one,etc.....

    So i stopped having them.

    (we had been told to have them every 5 years,as we worked on the farm.) they say,not more than three vaccinations in your life time!

    odd that!

    And I read a "paper" somewhere,some years ago (but can no longer find it)

    That the Tetanus vaccine was causing damage...

    - Coincidental, do you think,that the rules on the vaccine changed?......

    or

    did any of you have M.E before the FND type of thing reared its head?

    (just wondering....)

  • The problem is neurologists are no longer diagnosing M.E even though it is recognised by the World Health Organization as a neurological disease. In fact, a lot of what Dr Stone has written on his website describes ME. There are over 5,000 biomedical papers that show physiological problems in ME, however doctors in the UK, in particular, ignore the research unless it's been done by a small group of psychiatrists.

    A useful website that talks about M.E, it's symptoms and the politics around it is hfme.org . I don't agree with everything on the site, but it does give a fairly accurate history. Another website is Dr Byron Hyde's website at nightingale.ca Dr Hyde has done a lot of work on M.E, and has spent time with leading researchers in the field.

    I originally had a diagnosis of M.E, and have many of the symptoms that go with it. Look on the hfme.org site and see the list. I was referred to the National Hospital in Queen Square London, unfortunately they are one of the main hospitals that are trying to change ME into a functional illness. I was told I have FND.

    Dr Stone also considers M.E to be functional, which makes me suspicious of everything else he writes on his website. He seems to either be unaware or completely ignores the evidence of the physiological basis of M.E.

    M.E has become confused with CFS sine an outbreak of ME in the US in the 1980's. The CDC only focused on the fatigue, ignored all the physiological evidence and created a criteria that was based on fatigue. The book Osler's Web talks about the CDC's mismanagement.

  • A friend of mine has a tetanus shot, then 2 root canals. He became ill with neurological symptoms and was having difficulty walking. He has the symptoms of ALS and is in a nursing home. He can't walk. His wife took him to many specialist, Johns Hopkins, many other specialists, holistic dentist, had his amalgam fillings removed, did a detox. and many other holistic therapies. No improvements, only progression. He still, after 5 years, does not have a definitive diagnosis. And still cannot walk.

  • Yes, this does sound like many of us. I don't know if you are in the states or where exactly. Here in the U.S. they don't much call it fnd, its always called conversion disorder. I have dystonia, severe spinal stenosis and yes all of what you are saying. In the beginning I was labled CD, over the years, they have all but dropped this lable. And believe me it is a lable, with not much help in it. In those beginning years I was sent to pyschiatrists one after the other who said, I did not have a conversion disorder, I needed a good neurologist, then the neurologist would send me back. No kidding, this went on for 2 years. I have been blessed since that point to have great internal medicine Dr. who knew it was neurologic and treated me as such, and sent me to good neurologists. But everytime I have the dystonic storms or the weakness you both describe, there is a part of me, that says they could send me back 15 years and it is scary even to this day. Also, the fnd. site, in my opinion, does not go into detail with enough support for the neurologic point of view. They lable the two together, and they are not the same. NOT...Most CD can be helped and cured. What we have stays, most often seems to change constantly, and mine has morphed so many times, and keeps advancing. I had enjoyed a good 6 months of remission but now am very symptomatic again. I believe it is the involvement of my bladder that has triggered it. I am currently have problems with bladder incontinence, the Dr.s are starting to think its the dystonia. I think it is whatever this fnd is. We all have something a like, and many different, but it is damage of some kind to our brain. Our brains are misfiring, and until they address this, I do not believe any of us will get the help that we need. Am praying for you all, this thing is such a hard thing to deal with, even harder to explain to friends and others, how can we, the medical professionals cannot. God Bless you all, Cathy

  • Check out a short film "The Hidden World of FND" by FNDHOPE.org on vimeo please it will do you justice. I have had fnd for 5.5 -6 yrs now. Just diagnosed Jan 7th at Stanford Neuro Science Ctr. This was after over 200 visits to Neuro's in Colo. with Kaiser Permannate. min of 20 Drs who all looked at me some laughed at me and others said "Why do you walk so funny?" "How come your arms do not work right?" these comments from CU Med CTR top neuros. "Mr manely you are unidentifiable and irreversible in your situation. By the way we willmake sure you do not get social security disability. They said I was faking it!! The day I saw the judge,I was so bad half blind and could barely walk he wouldn't believe me. That was Dec 2012.

  • Hey Skifast, did you ever get Social security benefits due to this crap we have? I am at the part where I need to appeal, and having trouble getting help from docs to provide info. They just say it is psychogenic in nature, I am too happy, am not depressed, and can still get around and do things, so I don't qualify. Any tips?

  • Get a Lawyer they only charge if they win. I was in same boat and still am. But I am losing vision in ways I never imagined. I have appealed at least 6x. The National Institute of Health is now looking at my records. DrMark Hallet is on FNDHOPE web page. He is head of Neruology , hopefully I will see him for the record of appeal whenever the hearing wil be.. The letter said 10-12 mos. I have orginally applied in 2011. I do have a lawyer and they are flabergasted that I have been denied. I am broke can't pay drs anymore cant work cant see cant drive wife in denial says I am aburden . Hell they dont have to wipe my ass yet! I am not disabled enough for ssdi they said. No treatment no meds no nothing. Have you seen The Hidden World of FND? Go to avenuevision.com and see what my eyes do>

  • Foot drop is a condition which is associated with the lumber spine. When the nerve roots are compressed it causes nerve damage. Surgery to the lumber spine can remove the compression. That may help. The pressure is placed on the sciatic nerve which may cause numbness. There is also pain down the back of the leg/legs. It shows when a person walks, the foot makes a slapping sound . Other causes of drop foot, when sitting back on the heels and in the traditional yoga pose The Tree (Vrkasana), There is damage to the perineal nerve which is wrapped around the knee. You may notice pins and needles in the foot when the leg is straightened, if that is continuous and held for two long, surgery may be needed. Drop foot is not a neurological condition. What might be confusing is that a person with a neurologal condition may have arthritis or possibly had a fall which has damaged the nerves.

    I hope that helps to clear up some of the confusion regarding drop foot.

    Hop you will feel better very soon.

  • Oh yes, this has also happened to me. Was told last EMG/NCT showed muscle in upper arm smaller and that would explain the muscle atrophy in that arm and in hands. Then another doc said that didn't mean nayhting. Also Muscle Biopsy showed type 1 and Type 2 atrophy, which is rarer.. Another doc said "everyone has muscle atrophy." All three EMG/NCT have showed a problem. I am very frustrated tonight and don't feel like this is ever going to go away or even be diagnosed properly.

    Have been getting some Home Health Care and they are googling FND and stating that this is being described as psychological. My neurologist said it wasn't. Then why did he give me this confusing and easily misinterpreted diagnoses?

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