Re: How long did it take for you to be diagnosed - for mike gray

[Guest guest]

you wrote -

I have been very lucky

in the mobility part. I am able to walk easily with just a four wheeled

walker and occasionally around my house, yard and office without it. I

just

need it immediately when I need it. I feel like something is going right

with me and I am not progressing at all. However, my voice volume has

dropped in just the past three months and I seem like I have to force my

words out occasionally. That is getting more frequent.

Hi Mike

I cant find anywhere if you have posted when your symptoms began but

your progression sounds a lot like mine. I use the walker outside the

home only. Inside the home, i do not require it. I have been like

this for about 5 years. last year i also found my voice weakening.

It was driving me to distraction particularly when in a shopping

centre or restaurant. people just couldnt hear me. I started on

baclofen about 6 weeks ago and have had wonderful results with it. my

speech is stronger again. also i have spoken to you about the slurring

which i have had for sometime but i believe this is caused by taking

clonzapem. I have trialed my speech patterns with and without it and

it is always slurred with taking clonzapem but i cannot do without

clonzapem as it helps with my aniety and walking. Baclofen has also

counteracted the slurring. My intense startle reflex is also under

control. it has to be an unexpected loud bang to startle me but the

pop up toaster gets me every time. I would like to know when your

symptoms first began and i am sorry if you have already replied to me

about this.

thanks

maureen

> ,

>

> I seem to have lost the intense " startle reflex, " and feel good

about it. I

> really don't know where it went and expect it to show up when I

least expect

> it. The urinary frequency is getting worse. Someone once stated in this

> group that it was like your brain suddenly telling you that you were

> supposed to go an hour ago. Or something like that. I have been very

lucky

> in the mobility part. I am able to walk easily with just a four wheeled

> walker and occasionally around my house, yard and office without it.

I just

> need it immediately when I need it. I feel like something is going right

> with me and I am not progressing at all. However, my voice volume has

> dropped in just the past three months and I seem like I have to force my

> words out occasionally. That is getting more frequent.

>

> Welcome to this great group of people. There are a lot of us who

just read

> and delete. Many of us used to respond more frequently, but now just

speak

> up when we feel like we have something to contribute. There is a

wealth of

> information here, and none from any neuros. Just us plain folk. However,

> they seem to be catching on, since there seem to be more people

joining this

> group recently than in any three month period before. Guess the SPF

and NIH

> got the message out.

>

> Keep in there and here. Let us know how you're doing and we'll do

the same.

> May you see better days ahead.

>

> Mike Gray

> Re: How long did it take for you to be diagnosed

>

>

> > Hi Maureen,

> >

> > My PLS diagnosis took a month in 1993 and three weeks of that was

> > waiting for the MRI appointment. Had been feeling stiff and having

> > problems running, so mentioned it to my GP (a great doc!). He did

> > various simple physical tests with me, sent me off to see a local

neuro

> > the next day who did basically the same physical tests and then booked

> > me in for an MRI at a hospital which had only had their machine for a

> > month or two but already had almost a three week waiting list.

> >

> > Went back to see the neuro about a week after the MRI. That was

> > probably the worst month of my life, wondering whether what I had was

> > some inoperable brain tumour, MS or other horrible disease. Based

on my

> > clinical symptoms and the fact that my MRI showed abnormal signals in

> > the corticospinal tract he agreed with the guy who had written up the

> > MRI report that I had PLS. So, that was it, just under a month.

> >

> > In retrospect I think it was a pretty gutsy call given all I know now,

> > but I also think it was pretty spot on because in the eleven years

since

> > then I have lost my speech and much of my mobility, developed urinary

> > urgency and startle reflex etc and everything I have read from others

> > here on PLS-FRIENDS makes me confident that I truly do have PLS.

> >

> > Regards,

> >

> >

> > --

> > .

> > ,-._|\ Covington

> > / Oz \

> > \_,--.x/

> > v

> >

> >

> >

> >

> >

> >

> >