Re: PLSers in AUSTRALIA/Janet and

[Guest guest]

Hi janet

so nice to meet you!! you would be the halfway point between me and

where na will be staying. I live in Mortdale. trouble is, I

dont know how to get to Gladesville. North Sydney and your area are

places that i never go to. I actually did work at Gladesville many

many years ago but with the new expressways etc, its all changed now.

but we will work out something. Did your first symptoms begin 3

years ago? mine began 9 years ago. I havent been to see Dr Rowe but

it may be an idea to either rule PLS in or out. I saw the panel of

Neuros with dr also. they all think that I am more in line

with HSP as some symptoms may have begun in my 20's. I am 47 now.

na, sorry I am so slack but i will get you Dr 's details

soon. and thats great that you can get on a train!! i cant because i

mainly cant stretch my legs out to get on or off. If i could do that,

it would be good. but i live near a train station so i could pick you

up at mortdale. however we will try to work out something with Janet.

Janet I am glad that you have found a better quality of life. I tried

Neurontin some time back and found it didnt help. I started on

Baclofen about a month ago and that has worked wonders. I started

having trouble with my speech last year. It was weak and slurred but

more so when i took rivotril for anxiety and the startle reflex

problem. Baclofen has counteracted that. So i am really happy right now.

Do you have the overexaggerated startle reflex also?

see ya

maureen

> Hi Gang,

> How are you all? I don't post much due to fatigue, but I am well, just

> lurking. Welcome to all the newbies.

>

> ADRIANNA AND MAUREEN I read your recent posts. It would be nice if

we could

> meet up - I live in North Western Sydney, in Gladesville. I am in

a power

> wheelchair and use a communication device as I have no speech, but I

am well

> and happy, just can't travel in public transport alone. I can go to the

> local shopping centre alone though in my wheelchair, to meet friends for

> coffee, or a pub lunch, all of which is easily accessible.

> ADRIANNA say hello to my neurologist from me, the lovely Dr Dominic

Rowe at

> RNSH. MAUREEN have you been to the MND Clinic at the Royal North Shore

> Hospital run by Dr. Rowe? He diagnosed me with PLS on my first

visit, after

> seeing many other neuro's for nearly 3 years (including a panel of 9

neuro's

> with Dr. at Westmead). You can tell I am a great fan of Dr

Rowe - he

> put me on Neurontin which gave me back quality of life.

> Janet Monaghan in Australia.