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TOPIC: Late onset generalisation/bladder involvement?

Late onset generalisation/bladder involvement? 6 years 2 weeks ago #478

  • Anke
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I live in the Netherlands (though hubby from the UK). In 2009 I was diagnosed with Cervical Dystonia, at which point I started receiving regular botox injections. In 2010 other parts of my body started slowly also being affected by dystonia, and my diagnosis has since progressed from segmental dystonia to now possibly generalised dystonia. Although my symptoms are thankfully not extreme, they overall affect me to where I have not been able to return to work yet. Apparently this late onset is very unusual (I am now 54) and I just really do not know what to expect (nor do my neurologists at this point), and was therefore wondering if anyone else may have similar experiences? Also, recent testing has shown that my bladder sphincter muscles have very high "tonus" and it seems that dystonia might again be the culprit, most likely necessitating additional botox injections. Again, does anyone have experience with this (dystonia bladder involvement)? It would really help me to if possible find out a bit more, as my condition seems to be rare within an already rare disorder ....
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Re: Late onset generalisation/bladder involvement? 6 years 1 week ago #484

  • butterfly
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Hello Anke I was diagnosed in 2010 mine started very similar to yours I am now 41 and neurologists say the same that it's rare and I don't fit the so called box. I also had problems with my bladder and sphincter causing severe incontinence of which I had many operations in the end last year my urologist removed my bladder and now have a urostomy. I would like neurologists or whoever to do some research on the bladder side of things but they just say its not connected I now know of 3 other women with dystonia and have problems. I will try and sleek to my neurologist again anyway welcome to the forum The dystonia society are very helpful have you signed up as they send journals and news letters and are also available to ring on their helpline. Take care from Butterfly x:)
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Re: Late onset generalisation/bladder involvement? 6 years 1 week ago #485

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Dear Butterfly - thank you for your reaction, and it was encouraging to hear from someone else who "doesn't fit the box"! Not being a textbook case seems to only complicate matters ...

In regards to bladder dystonia, late last year my GP referred me to an urologist because of problems which were not considered to be dystonia-related. The urologist himself thought differently and further diagnostic tests appear to confirm his suspicions. However, this urologist has since had a difficult time finding much material on dystonia of the bladder (which he had never come across before). But he is still researching and also corresponding with colleagues. As it stands now I will be treated with botox injections for this also, to be coordinated with my CD botox treatments.

Also, I thought that perhaps you might be interested in some information that I came across on the internet on this subject? (see below). - Wishing you all the best, and thank you also for your suggestion on registering, have now done so! Anke

www.dystonia-foundation.org: “The bladder is made up of smooth muscle, and therefore not affected by dystonia. However, the muscles around the opening of the bladder (the external sphincter) can very rarely become involved."

www.care4dystonia.org: "Botulinum toxin injection therapy is sometimes used to treat dystonia, a neuromuscular disorder that produces involuntary muscle contractions or spasms in the eyes, neck, face, voice box or the smooth muscle in the bladder."

www.pdf.org: From “Gastrointestinal and Urinary Dysfunction in PD” by Dr. Ronald F. Pfeiffer: Impairment of bladder emptying is a less frequent but still troublesome feature of urinary dysfunction in Parkinson’s. ... Dystonia of the urethral sphincter has also been described."
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Re: Late onset generalisation/bladder involvement? 5 years 11 months ago #607

  • shakes
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I also had terrible incontinence., also have problems with opening bowel. Just feels like I can't find the right muscle . Improved drasticaly once I started on medication.
I also dont fit in any of the 'boxes' my wonderful neurologist admits a lot of my problems are unusual.
My latest problem is that I garble rubbish almost all the time. Sounds as Iam fluent in another language . some times speech go es completly.
So you definately not alone, sometimes I think I must be imagining it as it's so hard for friends and family to understand.
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Re: Late onset generalisation/bladder involvement? 5 years 11 months ago #609

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Hi shakes
Thankyou for your reply to my message can I ask what medication are you on as you said its helped with the incontinence have you seen a urologist for it how else does your dystonia effect you and how long have you had it
Take care x
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Re: Late onset generalisation/bladder involvement? 5 years 11 months ago #610

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I was on a senimet. Worked really well for me initially, But after three months or so my symptoms became worse . I am on trihexyphenadyl- not sure if thats correct spelling. Incontinence wise things are pretty much normal now.

I had a car accident jan 2011, My symptoms started immeditately, but thought it was a back injury. I went to hospital in May when my incontinence was at it's worse. The plan was to operate on discs. But luckily the consultant decided to refer to a nuerololgist due to leg tremor and that's when I was diagnosed.

But my dystonia seems to have spread throughout my body. There isn't a part of me uneffected now. I feel so lucky to have had such a prompt diagnosis. But I feel so disabled to do anything at the moment, feel like it's controling my life.
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