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Re: Re:Barbara - UK

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Barbara,

I have PLS and I take Baclofen and Neurontin as well as 1000 mg. of Magnesium

daily to help with cramps in the back of my legs. I am also on multi-vitamins,

B12 and A&D since I previously had a gastric Bypass.

S.

SusieQ susieq2828@...> wrote:

Barbara, you may be the only one on PLS Friends (I don't know) but not the

only one in the UK with PLS. I saw a doc at Oxford and he said he knew of 70

cases in the UK and he saw 12 of them. Susieq

barbaradurkacz barbaradurkacz@...> wrote: Hi eveyone -

Am I going to be the only one from the UK? I am sitting here with

cold feet - agreeing with everyone wholeheartedly who says that the

cold makes the spasticity worse!

As you appreciate - I'm new here. 56 year old woman - still working,

walking with a crutch (falling over a fair bit). About 3 years since

sympton onset. My consultant neurologist says PLS, but I get

confused by this as I do get some fasciculations in my legs (? -

anybody else get this and wonder if what they've got is just a slow

variant of ALS?).

I am a cancer research academic, and have read the literature on PLS

and associated diseases fairly extensively. I am interested in what

drugs and " nutriceuticals " other people with PLS are prescribed. I

currently take Riluzole (aka rilutek) and high dose vitamin C and E.

I've recently added in zinc. Do people in the US take riluzole or is

expense/insurance a problem?

Look forward to getting to know y'aal!

Barbara

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