Re: Flora

[Guest guest]

I hope you dont mind me eves dropping in your responce to Wayne.

I read what you said and couldnt beleive how much our stories sound, except for

when you said you have a great deal of body strength. ALS was never mentioned to

me except when they said they needed to rule things out, but I had one spot on

my brain (lesion they called it) that never changed with the numerous MRI'S I

had. They couldnt figure it out because my lesion is on my right side of the

brain and all my weekness is on the right side. I think I had about 10 MRI'S in

2 years time. Thank God for insurance. Sandy

Re: Wayne/companion

Wayne, I did have an EMG and it did show some un-normal signs in my right leg

and shoulder area. My left side is OK. Every other test he did were clear

but he still was not ready to say I had anything else but ALS. He said time

would tell. I had a EMG then MRI's of the brain and spinal cord, spinal tap,

deep muscle bioscopy, swallow test, hearing evaluation (for balance problem)

blood tests and I was sent to an MS specialist to see if I had that. The only

test that showed anything were the EMG and the MRI. The MRI showed one spot,

they first thought that it could be MS plague or perhaps a tumor. I had to

have

MRI's done every other month to see if it grew. Well, it didn't grow thank

god so that was ruled out. They concluded (brain surgeon and the neurologist)

that it was a cluster of blood vessels. All that took over a year of wait and

see. Since I didn't get any worse and didn't have muscle atrophy I was

re-diagnoised as PLS. To this day I have a great deal of body strength. The

neurologist always comments on it when he tests me. Everyone is different.

Pls is

not the same for everyone I don't think anyone knows for sure why this

happens..................Flora

[Guest guest]

Wow I think you did the right thing on changing doctors, I have never heard of a

common faint, sounds like he had a few screws loose. Sandy

Re: Sandy

Sandy, yes I think there are several of us that have that same lesion. Can't

remember what side I had it on just to long ago. I'll ask the neugolist the

next time I see him. There is a common thread that we all have we'll just

have to wait and see if they find it. I feel as tho that leasion accured when

I

fainted in the grocery store before anything other signs of PLS ever showen

up. I went to the doctor for it and he did an EKG and it showed nothing

wrong.

He passed it off as a common faint. I never heard that one before. I got

another doctor after that....................Flora

[Guest guest]

Hi Flora,

Its hard to believe but I dont think I have had any after effects from the shots

thankfully. I dont miss them at all, the needles were huge and had to go into

the muscle (OUCH). The chemo though put me into menopause, which is fine because

now were enjoying our grandson, I dont need and dont miss that monthly stuff

anyway. Sandy

Re: sandy

Sandy, Did you ever have after effects from taking the MS shots for that

long?.....just wondering.......Flora

[Guest guest]

Sandy, Glad to hear it didn't effect your health much. that monthly thing

has its pro & con's. I started menapause around the age of 49. I don't miss

it but I do miss what those homones can still do for you. I started having

PLS symtums about the same time just thought back then it was just due to the

change of life.....I wish!! .....Flora