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TOPIC: help has this made my dystonia worse ?

help has this made my dystonia worse ? 3 years 4 months ago #3274

I have had kinaesthetic dystonia which was diagnosed when I was in the military for over 25 years and managed to cope and work reasonably well until with a few down spots and after two years of learning to cope with the variouse muscular issues. kinaesthetic dystonia is a generalised dystonia I believe all though when it was first diagnosed it only affected my left hand side,
my "attacks are now either focal or whole body experiences and affect every part of my body with shakes, not being able to control muscles and cramping of variouse or all muscles including my face and tongue, I am presently undergoing a new round of tests because I have at present being off work for seven months.
anyway my question,s three years ago I had an accident at work when I nearly lost a finger this was put down to negligence on the part of the company I was an agency worker at the time at the same time I applied and got the position as a team leader directly from being a agency line worker to team leader of another department on hindsight was I bought off ? I of course I accepted a payment but so as not to rock the boat I accepted a much lower payment than I was due according to my solicitor.
any way could this trauma of re-activated? triggered my dystonia to of start again ? since the accident I had no issues for twelve months but then within the last two years I have being diagnosed with hypertension -- diabetes and my dystonia is slowly but surely taking every bit of control away from me attacks/ storms have increased ten fold in recent months along with this has gone my confidence my self respect and my peace I am constantly in pain and one kind of spasm or another and it seems to be getting worse I don't know where to turn or what to do any and all advice greatly and appreciatively received.
tomorrow I have a "absence review at work" and they have told me I am likely to be finished on capacity grounds this is a quick overview but I am in a state of panick at the moment I hope this is not too much of a ramble I do have a good family and a loving wife but there is only so much you can share with those so close without it hurting them too
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help has this made my dystonia worse ? 3 years 4 months ago #3275

  • Tez
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Phew a lot going on, sorry can't answer your question but I was told by my neuro that stress can trigger the onset of dystonia ( as I believe it did in my case) and that stress makes the symptoms much worse.

You don't say what meds your on ? I take clonazepam and propranolol and only take pain relief occasionally so lucky but was only diagnosed a couple of months ago (I'm 58 now).

In terms of work I was off sick for 5 months from last August to this February, I haven't been off sick since but have been using 2 days as annual leave every week as I
was so exhausted.
I had a mtg with hr, my Mng and union rep last friday and have accepted a temporary reduction to 3 days a week to be reviewed in 6 mths. Having a union rep is essential, you will be covered by the equalities act as you have a chronic lifelong condition so your mng's will have to abide by the law and make reasonable adjustments to your working life. Don't let them bully you into leaving under any
Circumstances

Good luck !!
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help has this made my dystonia worse ? 3 years 4 months ago #3280

thankyou
so very much for your reply I have only just begun to accept this
illness have spent a long time ignoring and refusing to accept it I
wish I had accepted it sooner.
I am on baclofen 80mg a day tramadol 400mg a day 400mg paracetamol
and naproxen
I also take metformin for diabetes and
ramipril and amlodipine for hypertension
I have just had a mri scan today only my second one in twenty five
years my new neurologist would appear to be more thorough than any
other I have had for a long time
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help has this made my dystonia worse ? 3 years 4 months ago #3282

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Good luck with the MRI and your new neurologist. Hope you got on ok at work
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help has this made my dystonia worse ? 3 years 2 months ago #3357

hi tez
so my new neurologist is putting me on chlor something and reducing the tramadol and baclofen so that's good news I hope .
work are going to finish me on ill health capability and that process is now well and truly underway just waiting on a doctors report and then a final meeting with occ health hr and my line manager that's not so good but will relieve some of the stress and hopefully I can start to put my life back together just trying to stay positive and deal with stuff on a daily basis
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help has this made my dystonia worse ? 3 years 2 months ago #3360

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Hi
Don't work about the mtg with Mng and HR it will be a formality, you will be entitled to have someone with you for support. That can be a union rep, a colleague or a friend etc. If you don't want to finish work then they have to provide reasonable adjustments to you by law. If it is your choice to finish then remember to apply for any benefits you may be entitled to.

I have been given physiotherapy through occ health and I work with a physio who has offered me hydrotherapy and massage which should be helpful. My upper and lower back and neck ache as soon as I get up I know driving etc makes it worse so am hoping to get some relief esp from hydro.

I wish you well in whatever you choose to do and hope the new meds are helpful to you is the new drug chlorpromazine or clonazepam ?

All the best
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