Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 Hi Kathi Since you are in contact with so many HSPers it would be wonderful if you could ask them. Could you bring it up at a meeting. since i havent gotten a firm diagnosis as yet, the name of my disorder is Spastic Paraplegia with Startle Myoclonus. maybe i dont have either HSP or PLS. symptoms began 9 years ago and saw my first neuro 7 years ago. You would think that they would have come up with a firm diagnosis by now. Maureen > In a message dated 7/6/2004 12:02:22 AM Eastern Daylight Time, > PLS-FRIENDS writes: > > > > Since i dont know whether i have HSP or PLS, I would like to know if > > there are any HSPers out there that have the over exaggerated startle > > problem. It appears that it is part of PLS but wondering if the same > > goes for HSP. > > Hi Maureen, > > I have HSP and have been involved in the community since it's beginning in > 1996 and serve on the board for the Spastic Paraplegia Foundation. I've met > hundreds of HSPers at dozens of Connections and Conferences and have read almost > every HSP post since 1996 and almost every PLS post since I joined Friends 3 > years ago when we started to plan to form a Foundation for both disorders. > > Occasionally, HSPers have indicated a strong startle response, but my > recollection is that I hear it more from PLSers. However, maybe it's not been a > featured discussion for HSPers. Maybe we should ask! > > I would say my startle response is probably a tad more than most, but not > overly exaggerated. > > best, > Kathi > > > Quote Link to comment Share on other sites More sharing options...
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