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doctors say i have F,N,D but i think their wrong

Posted , 3 users are following.

linda20584
linda20584

in october 2015 i was diagnosed as having functional neurological disorder,my health has went from almost perfect to having,two hands that no longer function ,reduced mobility in my right leg siezures . swallowing difficulties,temporary full body parralasis etc,etc, as i said the doctors have said fnd but i,ve been looking around for other answers as i am not convinced this is what i have, to be honest my symptoms seem to tie in with mnd and i don,t know what to do as the doctors dont seem to take a lot of notice ,the only thing i,ve been given in the past year is pregabalin,,where do i go from here ?  thanks for reading my post

2 likes, 3 replies

3 Replies

  • SteV3
    SteV3 linda20584

    Posted

    Hi Linda,

    I have Generalized Dystonia, but also have a very bad Cervical Dystonia (Neck muscles spasms all day). I have to see a Neurologist every 10 weeks for BoTox Injections, 6 injections in my neck and in my Chronic Trapezius Muscle. This works to a degree, but takes 2 weeks to have any effect then lasts about 6 weeks before wearing off. I also take Madopar to take the edge of the pain during the time-gap between Injections.

    It took Neurlogists nearly 2 years to diagnose what was wrong with me. Pregabalin I found totally useless for muscular pain, I was put on a low dose of Tramadol and Amitriptyline, along with Paracetamol at nights. Even now I have some nights were I just "cat-nap" (broken sleep) all night, and you can not catch up with lost sleep (that's an old wives tale!).

    However, in your situation I would ask for a referral to see another Neurologist and/or Rheumatologist, I mentioned both for a reason - if you google them you will see they cover similar areas, but you never find two Neurologists the same. I have a team that cover me and also the British President of Neurology Dr. G. Fuller, whom I see roughly every 5 months.

    Never take the word of a General Practitioner, they are not specialised in specific fields, hence diagnosis can easily be over looked, and if I was you I would ask for a referral ASAP from your Doctor, if she/he refuses then ask to see another doctor that will refer you. Some can be a nightmare, I've had a few in my life.

    See how you get on..

    Regards,

    Les.

    • linda20584
      linda20584 SteV3

      Posted

      thanks very much les ,i will follow up what you have said smile

      regards linda

  • kerry53469
    kerry53469 linda20584

    Posted

    I was diagnosed with the same thing and have similar symptoms I am currently looking for a second opinion
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