Just been diagnosed with generalised Dystonia myoclonus type

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After 18mths of symptoms and various medical tests for eg DaT Scan, MRI and SSEP 

just started on clonazepam and see specialist neurologist again in Aug, can anyone advise whar questions to ask and has anyone with this condition tried clonazepam ? Was also supposed to start on propranolol but am worried because I have low blood pressure so will discuss this at next app.

thanks in advance

theresa

 

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  • Posted

    Hi Tezes,

    I have Generalised Dystonia, Functional Episodes and Epilepsy. Myoclonus can be treated to an extent, but theres no known cure - which is the same in my case, it can be very frustrating. Clonazepam can help, that is one medication I take to control it. You mentioned the use of Propranolol, which version of Myoclonus do you suffer from?

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    • Posted

      Don't know type of myoclonus just that the dystonia affects my arms legs and lower jaw with a jerky tremor causing spilled drinks and unsteadiness going down stairs etc. also have jerky movements of my left upper arm when I'm in bed and right foot when I'm driving reaching for pedals. The neurologist that I see specialises in movement disorders and diagnosed dystonia. I presume it's called myoclonus dystonia ? 
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    • Posted

      It seems in your case that the consultants are stating that you have a form of Dystonia (probably generalized) which is underlying nerve disorder and causing Myoclonus. Taking a medication like Clonazepam can reduce the effects, but not fully stop the jerking movements.

      Trihexyphenidyl (aka Artane) can also benefit people that suffer from Dystonia symptoms (it is also given to people with Parkinson's disease, because it is used to treat muscle spasms, tremors, poor muscle control and stiffness in muscles. You could mention this to your Neurologist consultant and see if it would be beneficial in your case. Please note the side-effects from this medication can seem that it is causing jerking to become worse. I take this medication for dystonia (generalized) and have been for nearly 30 years, I have never been taken off them.

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    • Posted

      Thanks that's helpful, I see Neuro next Mon 4th the drug you mentioned sounds like it would deal with all my symptoms, not sure if I have muscle spasms. I do get aching in my hands and arms very easily with use, even holding my phone or mini iPad, like I have been gripping it for a while. Sometimes it's an ache sometimes pins and needles sensation also had to stop knitting coz hands ached, don't know if any of that is related to my condition. I will discuss/ clarify diagnosis  & meds on mon at app don't think clonazepam is having any effect yet but I am tolerating it well so far. Just started 2 weeks ago though and on lowest dose 0.5 mg at night.

      thanks again for advice will post again after app,

      Theresa

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    • Posted

      You're welcome. I get aches and pains when trying to write, my writing starts off okay but becomes worse the more I do, until its totally unreadable even to me, yet alone to anyone else - the pain is like writers cramp and effects my hands, wrists and arms. Generalized Dystonia does effect most limbs, that is why I was re-diagnosed last year. Before it was classed as Focal Segmental Dystonia, but that was back in the 90's and it was rare back then - and less limbs were effected. There are numerous drugs that can help you with Dystonia, some tablets cause side-effects so doctors use other meds to conteract them.

      Botox is another medication which can be administered, but this is only injected in to muscles that effect you badly, I have it in my neck muscles and left should every 3 months.

      Madopar is another, but this is a drug that is normally tried when the above fails. However, both can be given together.

      There is also a cure, but the chances of success are very low, and not even I would opt for this way. I am disabled in many ways, but I rather be living and enjoying life the best I can, and watching my children grow up.

      Just a few more options you have available to you! Hope you get on well today! smile

       

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    • Posted

      Hi again

      app went well, neuro told me I have dystonia, dystonic tremor and myoclonus. This is the info she gave me:

      . clonazepam is her first drug of choice with add on proponalol. 2nd choice topirimate, she made a list after that so will have to wait for her letter as I can't remember them.

      .  dystonia in most people only affect trunk upper limbs head neck areas. So although didn't say the word generalised said it's a rare form that I have as it affects my legs and feet. 

      . My body has a exaggerated response to sudden noise, being surprised etc and anxiety, stress is part of the condition and being anxious or stressed makes symptoms worse.

      . A third get better on meds, a third symptoms stay the same, third deteriorate

      . Didn't specify type of myoclonus just that some people with dystonia get it

      .she wants to repeat the DaT Scan in a couple of years time but at this mo I do not have Parkinson's ( thank goodness )

      .suggested I cut down working hours and driving if poss  to reduce stress and getting good night sleep all help ( I work F/T and have very stressful busy job )

      Well that's it in a nutshell so now have some decisions to make re work, I have mtgs with HR, Occ Health union rep and pensions agency.

      will now wait for letter then back to GP to start increase of dosages of meds etc, ......... 

       

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    • Posted

      When it effects you legs and feet, do you suffer many cramps - tightening of the muscles or spasms. My form of Dystonia deteriorated over the years, hence why it was re-diagnosed last year. There is another option but it does not suit everyone and not all Consulatant Nuerologists will even administrate Botox to leg muscles. My calf muscles are constantly tensed, and many times cramped, which is why I'm on Tramadol as well.

      Many people think I have Parkinson's, similar in symptoms but entirely different. I was put off work due to insurance purposes, which caused me to be a danger to myself and others. Two of those medications I have never even heard of, I must be behind the times. lol

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    • Posted

      Yes I get jerking muscle spasms calf & feet and cramp in feet, usually at night when I go to bed and when I wake etc. so not constant at all, get jerky movements in right leg and foot when I'm driving, moving from brake to accelerated. She couldn't tell me whether my condition was still developing or deteriorating I only know I am still getting new symptoms. Neither could she tell me whether the drugs will work or condition will deteriorate despite the drugs, only time will tell. I agree symptoms are similar to Parkinson's so I understand why she referred me for a DaT Scan and why she wants me to have another one in a couple of years because people with dystonia can develop Parkinson's and visa versa. I am lucky because I don't have too much pain apart from aching and the cramps in legs feet. 

      Hope me that info is helpful

      take care

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    • Posted

      Hi less I hope you don't mind me messaging you I'm really struggling to get a diognosis of dystonia my neurologist is stating because I have functional seizures that this causing muscle spasms abnormal posturing tremor and cramps and that all I need to do is see a phycotherapist I am now full time wheelchair dependant and need full care from my partner is also have a six year old autistic daughter that I'm struggling to care for fully I feel I'm not been listened to and that it's all in my head the pain is terrible due to the spasms and muscle cramps and I'm desperate to get some real help and a consultant that will listen to me my current one never even asked my symptoms even though I had a full on attack while talking to him he just said you need to see a psychotherapist and that no medication would help me,eny advice would be greatly Apricaited

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  • Posted

    Hi Tezes,

    just thought I'd say hi as I also Dystonia and Myoclonus with an Athetoid tremor, all symptoms of having Cerebral Palsy.. I take clonazapa plus baclofen as well as pain meds to try and help with the movements and chronic pain, but I was put on Sinemet last February to try and reduce the Dystonia movements/jerking as it have gradually become worse over time.. Mine is generalised and more severe on my left side, but my head also twists suddenly to the right and I now get night spasms/cramps in my legs and feet that get quite painful..

    This may sound crazy but try and think positively as I find stress and worry robb as of the other small plesiosaurs in life.. Take the good days and try to use them to accomplish something you may like, I paint as I find it's good hand therapy and I do enjoy painting in my own abstract way.. I also play Boccia, a game similar to bowls but more for people with a quite significant disability, and it's also good exercise for my arm and hand function and helps to teach coping skills with my brain and reduce the movements a little..

    Sadly there is no cure for this kind of illness except the medications doctors prescribe for th systems, but there is a lot of life ahead of us that I want to enjoy - warts and all..

    Over my lifetime living with quite significant disabilities - I've found one good piece of advice, 'a positive attitude is fantastic medicine'..

    All the very best Tezes and please remember, we are all in this together.! smile

    Take care and try to have a good laugh each day, (even on the not so good days), as this helps with the depression..   Mike

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    • Posted

      Hi Mike,

      Tezes and myself assumed it was just us two that were on this website that suffered from a form of Dystonia. Mike, I appreciate you taking the time to write the details of how Dystonia affects you. I have found it rare to find anyone on the internet that has Dystonia and their head jerks to left, and mainly all my right-side limbs are all affected, my mobility is has become worse over the years. And like yourself I get very painful spasms and cramps in my legs, mainly at nights.

      This may sound like a silly question but what is Boccia? - another problem I have is hand coordination, I cannot control my right hand properly, mainly from spasms, but also my brain sends the wrong signals at the wrong times which is a nusiance more than anything.

      Taking up a hobby is a good idea, I used to draw to very standards before this problem poked it's head in the way, now I cannot even write my signature twice without it looking totally different. Even using a computer is a pain, having to try and control a mouse with 2 hands!!

      I'm on antidepressents but thats for partial pain relief at nights when I'm trying to get to sleep. By the way, that is one good piece of advice. There was an actual cure years ago, well that's what they said it was - it was very expensive and involved deep brain stem surgery and the rate of success was very low.

      Anyway, Mike may I wish you all  the best in that game I have never even heard of....lol  Probably speak to you again around these forums. smile

      Regards.

      Les.

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    • Posted

      Thanks for your reply and how Dystonia affects your life..

      i also have poor mobility hand hand coordination Les, that's why I play Boccia - perhaps you might benefit from giving this game a go..

       I Also have difficulty using most computers and have no show using a conventional mouse, but with some special Assistiveware, a predictable large keys keyboard plus a large trackball mouse installed on my computer, anything is posable wink

      take care and keep laughing, you never know it might even cure this crazy illness...  Mike from South New Zealand 

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    • Posted

      😄 Hi Mike (&Les)

      Thanks for comments

      Sorry couldn't reply sooner, just moved house and no internet as yet 😁

      I have a saying, don't get bitter, get better!

      My dystonia is primary prob inherited according to Neuro although don't know anyone else with it. 

      I have Clonazepam,for jerks Propranolol, tremor & Sertraline. I also have chronic migraine but Neuro says the Clon & Prop are also good to prevent migraines although I haven't had any improvement so far.

      I often take painkillers just for the aches and pains, esp at night to help sleep. Mornings and nigh times are worst and tremor is more noticeable right sided.

      On the bright side I can drive, walk shortish distances on the flat unaided so am doing ok, the meds help a lot and dosages are still being increased so hope will get even better ! Going to try for a blue badge (disabled car parking) not sure I'll get one but you never know 😉

      Wishing you both all the best, positive experiences and reduction in pain

      Take care

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    • Posted

      HI Tezes,

      What a game, moving house that used to be a nightmare we used to dread - but we had to keep moving 17 years ago now, so I could fight for a place on medical grounds. Stairs and myself, don't really do well - they normally win and I end up out of breath. lol

      Blue Badge, I just had my renewal form come in the post - the current one runs out on December 9th 2014. I think the last time I got one, it was about £2 or £3, that's gone up to a £10.

      Don't you claim DLA Mobility Component Tezes? This automatically entitles you to a Blue Badge. DLA is a non-taxable allowance, which is what I gave up to get our car, but because I have to carry a wheelchair, quadpush and my quadstick I have to have quite a large car. I tried to get a Kia Sportage 2.0 TD.... one problem, the car was that wide it wouldn't fit through our driveway gates! LOL  So, we got a smaller in width car called a Mitsubushi ASX3 1.6, which we can fit all into - I can't drive anyway, my license was revoked about a week before I was due to take my test. Back then you had your license revoked if you suffered from Seizures in the past 2 yrs, now its down to 1 year.

      @Mike

      I seen those trackball mice, not sure I could get on with one though. Over the years I have learn't many keyboard-shortcuts, most use the Tab key.

      Well, Tezes I got an appointment at the Pain Clinic... but not until the 17th December 2014 at 9.00am, that's probably my worse time of day, everything locks up overnight..lol 2 months to get off this Tramadol.

      Regards,

      Les.

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    • Posted

      Hi 

      No I don't claim anything. I have reduced my working hours from full time to three days a week now which is more manageable and the stairs at this house are much easier for me.

      Maybe when I finish work altogether I will try claiming for pip don't think I would get it yet. Seeing GP next week to increase meds so will ask if he will support a claim for blue badge.

      Scandalous having to wait until Dec for pain clinic when you're in pain, no sense in it eh.

      Poor you, hope you get some sense out of them when you do have your consultation.

      All the best

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    • Posted

      I only mentioned DLA because it is not a "means-tested" allowance and can be claimed even if you work, but have mobility issues, thats why I mentioned it.

      Doctors full details are always requested by the council authority that issues the Blue Badge.

      Fun this week our new Tax Disc (well not anymore) will be arriving from Motability. It all changed over on the 31st August 2014 - you no longer have to display a Tax Disc. Even less paperwork.

      Regards,

      Les.

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    • Posted

      Oh I see well I will discuss with GP to see if he will support a claim. Every little helps as they say. The move was a nightmare some people never clean before they leave, makes it harder but we are in now and will sort everything out in time

      All the best as always

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