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Parkinson Vereniging :: Toon onderwerp - Ervaring met Dopa Responsieve Distonie?
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Ervaring met Dopa Responsieve Distonie?
http://forum.parkinson-vereniging.nl/viewtopic.php?f=6&t=1105		 Pagina 1 van 1
Auteur:  Luise [ zo nov 22, 2009 3:38 pm ]
Berichttitel:  Ervaring met Dopa Responsieve Distonie?
Hallo Allemaal,

Heeft iemand van jullie ervaring met Dopa Responsieve Distonie?
Na een jarenlange zoektocht naar een verklaring voor mij steeds erger wordende klachten (oa stijfheid, spierpijn, vermoeidheid, tremoren, evenwichtsstoornis), heeft mijn neuroloog nu het vermoeden dat ik deze aandoening heb. Het is nu wachten op de uitslag van de lumbaal punctie en het bloedondezoek. Ondertussen ben ik gestart met Sinemet (2xdaags 125 mg en 2xdaags 275 mg) en daar reageer ik wel goed op. Ik ben veel minder stijf en een groot deel van de pijn is weg.

Ik heb op internet naar meer informatie gezocht, maar er is niet echt veel te vinden.
Graag zou ik in contact komen met mensen die deze aandoening hebben (of mensen kennen die het hebben). Hoe gaan jullie hiermee om? Hoe verloopt het bij jullie? Hoe houden jullie het onder controle? Is het onder controle te houden? En ga zo maar door...

Ik hoor het graag.

Groetjes,
Luise.
Auteur:  robbert1960 [ zo nov 22, 2009 5:48 pm ]
Berichttitel:  Re: Ervaring met Dopa Responsieve Distonie?
Beste Luise,

Op het internet staat vrij veel over Dopa-responsieve dystonie (Segawa’s disease)
Zie ook de website : http://www.dystonievereniging.nl/

Succes met het zoeken naar lotgenoten,
Rob
Auteur:  gclubonline [ wo sep 21, 2016 6:05 am ]
Berichttitel:  Re: Ervaring met Dopa Responsieve Distonie?
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Auteur:  yeahright [ wo apr 12, 2017 12:22 pm ]
Berichttitel:  Re: Ervaring met Dopa Responsieve Distonie?
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