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TOPIC: Does Anyone Suffer From Kinesigenic Dyskineisa?

Does Anyone Suffer From Kinesigenic Dyskineisa? 5 years 4 months ago #1199

  • Trish55
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Hiya, I have been to see a Neurologist today who thinks I have Kinesigenic Dyskineisa. He has put me on Carbamazepine 200mg daily.

I am 57 and have suffered for the past 6 years from very painful spasms, yet while reading up on this condition I find that it normally starts in childhood/young age which has baffled me!

Is there anyone out there that has this and been diagnosed later in life?

Thanks

Trish.
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Does Anyone Suffer From Kinesigenic Dyskineisa? 3 years 10 months ago #2962

hi
I was diagnosed with kinesthetic dystonia also refered to as kinesgenic dystonia I wonder how similar this is ? what is dyskinesia ? I was told it is very rare and have suffered from this for the last 25 plus years
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Does Anyone Suffer From Kinesigenic Dyskineisa? 3 years 2 months ago #3362

  • Supergran
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I did not know what kinesigenic means so i typed it into the internet and a website about somatics appeared I think it may be worth a read. I can relate to what it is saying because due to generalised dystonia I have not had control of my feet and ankles for a number of years and there have been complications of ligamentitis which has been very painful. So to fast forward my very long story I got splinta for my wrists and they support my joint and have allowed some healing and then I got splints for my ankles and again pain relief was instant and it is still a work in progress but I am getting back some feeling in my ankles, Given i have come from a wheelchair and crutches this is very exciting for me. And so back to the research on somatics for me it is like reading the theory behind what is looking like a success story for me so I thought this research was worth sharing.

And just a wee footnote.....I am talking about hard and sustained work and not giving up just because I am having a bad day so I dont want this to come across as do a few exercises and you are sorted. I suppose what is really happening for me is a change of lifestyle and accepting that for example do not reach for the painkillers just put the splints on for an hour and get over what you look like if people want to ask you why you are wearing them just answer and educate were as before I would have been too embarrassed. The ankle splints take a bit of getting used to in terms of walking but the benefits are worth the effort...you get the picture. And for me this is extended into food I am on a pureed c diet for swallow problems and find that having accepted my lot I am calmer and have found ways of enjoying toast again....chin to chest for swallowing take your time and do not fill up the stomach as the diaphragm muscles will spasm blah blah blah

I wish you every success in your research and pray for easier times for you....I absolutely know your pain

God bless

Christine XXX
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