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Re: Zsolt, for Maureen? C

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I hope you are right . Blessings to you!

Maureein in Oz

>

> > Lyndal thats ok I knew what you meant. LOL. Living in ski country,

> > you obviously have skiing on your mind. I wish I was there right now

> > as it is way too hot in Sydney for me. We are in the middle of a

> > terrible heatwave.

> >

> > I know that you mention that Zsolt never said what he had but then it

> > sounds like he was never diagnosed. I also have not been officially

> > diagnosed as yet and thats after 9 years of seeing many

> > neurologists. They also appear to have the wait and see approach.

> > Which now in view of Zsolts situation makes me feel scared. I was

> > given a working diagnosis of recessive HSP with startle myoclonus but

> > the neuro now doubts that and is talking PLS.

> >

> > Fortunately my progression has been very slow and apart my speech

> > deteriorating a little 3 years ago, I believe I have been stable for

> > 6 years now. Knock on wood, it stays like this.

> >

> > Thanks Lyndal for taking the time to write to me.

> >

> > Maureen in Oz

>

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