Generalized Dystonia and becoming more painful every Year!

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Hi all,

A quick introduction of what I have been suffering from since the age of 22, I'm now 50. At first no doctor in the UK knew what was wrong with me, because the symptoms were very rare, after 2 years I was eventually diagnosed with Torsion Dystonia, then came Focal Segmental Dystonia, then last year I hit the final Generalized Dystonia.

It effects my neck, shoulders, arms, hands, hips, lower limbs, ankles and feet. When I applied for ESA, it was granted without even seeing me in person (I was expecting a face-2-face examination at least). I have to use many disability aids, mainly for mobility (I have a car on the Motability Scheme, that was not cheap, with a £499.99 deposit), the bath/shower I have was adapted for use by a request from my Consultant Neurologist.

Now, for Generalized Dystonia I am taking Clonazepam, Artane, Madopar, Amitriptyline and Tramadol; and every 3 months Botox injections in the neck on both sides and my shoulders. Even with all these medications I still suffer in extreme pain, from all my main muscles which are cramped a majority of the time. The trouble is Botox only last around 8 weeks in the body, it takes 2 weeks to work in the system, and after 8 weeks it's gone. So then I have to wait another 4 weeks before the next dose cuts in. My Neurologist has said that it can be administered in the legs to ease the muscles from being in a permanent spasm.

Has anyone else been offered Botox in heir legs before? The reason I ask is because I have heard mixed views with Botox injected in to the leg muscles.

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7 Replies

  • Posted

    I'm so sorry for all the pain you are going through.  I thought I had a lot of pain but you must be suffering.  Hope all goes well and keep us up to date about the botox in your leg muscles.
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  • Posted

    Hi Tezes here,

    (We've message before when I was recently diagnosed)

    I'm sorry I didn't realise you had so much pain, now I'm wondering what's in store for me in future. 

    I recently have been having what I can only described as like a toothache pain sometimes  in my legs and sometimes my arms and hands. Only taken painkillers at night to help get off to sleep. 

    I have posted on here to ask what other symptoms I can expect but not had any replies. Just to recap neuro gave me a diagnosis of rare type of dystonia with dystonic tremor and myoclonus.

    Hope you get some advice re your treatments and Botox etc, you've had this for so many years, sounds awful

    All the best

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    • Posted

      Hi Tezes,

      I remember messaging you recently. I was diagnosed by Professor C David Marsden whom sadly passed away (1938-1998), I seen him on many occasions at the Queens Hospital in London. He diagnosed me with Torsion Dystonia, at that time there were only 7 known cases in the UK. It is not the same with all people, some do improve over time, while others can stay the same or the Nerve Disorder does become worse.

      What you have to take in to account is some medications prescribed can give you tremours, which in my case is Epilim for Epilepsy. So basically doctors have to try and balance out the side-effects from one medication by adding a counter-acting medication.

      In our bungalow, it's a case of making everything Les (proof) because I cannot hold a cup still or even stand for long. I do try to use a quad-stick for walking, but if I get stuck a queue for something, I have to sit down because of pains in the pelvic muscles. The worse time of day for me is in the morning, which can take me up to 30-45 minutes just to stand up from getting out of bed.

      I get by, my wife helps me a lot, along with my daughter and sons. But it is getting to a stage now where trying to pick tablets up is problem, I try not to let it beat me. rolleyes

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    • Posted

      I guess coz you've had it so many years and having EP makes it more complicated. 

      I suppose you've had OT involvement for aids around the house etc. 

      I can hold cup with two hands but it wobbles with one, I'm r handed and that's the side that's most affected with tremor. 

      I can imagine driving becoming more difficult if my meds don't control my tremor but you can get adapted vehicles I suppose. 

      Anyway just wondering if you could get a review of all your meds ? Isn't there anything else can be done for you? Have they suggested any surgical procedures. A lot if people seem to have experience of that on this site. Good you have a supportive family.

      Wish you all the best

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  • Posted

    Don't do it. I let Vanderbilt diagnosis me with spasmodic dysphonia and i let them inject botox into my vocal cords for three years. I suspected it was affecting me negatively and went to visit a doctor morton cooper in california. He told me that poison was killing people and vanderbilt was withholding that information from me. I ask them if this medicine or poison was doing to people. This botox is a worldwide money making scheme medical systems are giving anyone unknowingly will take it for extra buck. Dr Morton cooper was head of head and neck at a well know california university medical center. Look
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    • Posted

       I have been on Botox now for about 17 years roughly, I know it is used in a more potent form to kill rats, and show business people use it in small quantities for cosmetic purposes e.g. to make muscles 'droop' to make themselves look younger!

      I personally would not take Botox for cosmetic pusposes, then again I have a higher dosage injected in my neck and shoulders - this does relax the tension of muscles for about 8 weeks before wearing off. Basically, it relieves pain for about 8 weeks, but then it takes 2 weeks to kick in and another 2 weeks at the end of the 8 week period.

      I have had Epidurals but its a drug that needs to be constantly injected and dangerous. The last one was Methadone, but I could not handle the 'side-effects' which, I would class worse than Tramadol.

      They run a morning once a month at my local hospital, which I have fto attend every 3 months for Botox injections - it is always packed with people with nerve disorders. They did take me off Botox once, and doubled up the amount of Madopar I was taking, but that caused more seizures, hence it was lowered and Botox was back on my long list. sad

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