Re: Life span predicted by dr.

[Guest guest]

Although there are some exceptions, after my more than 35 year career in

health care, it is my opinion that surgeons of all kinds, are not really

that well versed in 'non-surgical' issues. I'd take that neurosurgeon's

prediction with a grain of salt. You'd do her a favor by sending her a copy

of the " Physician's Guide to Primary Lateral Sclerosis " because she may not

know what PLS is. Many of us, myself included, have been in the offices of

doctors (neurologists included) who had never heard of PLS. I worked in a

large prestigious medical center and was evaluated, tested and turned inside

out there and at quite a few other equally prestigious places; yet I did not

get a diagnosis of PLS for almost 10 years. You can get the booklets for

free by contacting NORD at www.rarediseases.org. Get one for yourself, too.

It's a great booklet.

Dolores (PLSer in CT)

Life span predicted by dr.

> I am so glad that everybody agrees that the doctor did not know what

> he was talking about. Acutally he is a she and supposedly a top

> neurosurgeon. I think she was trying to diagnose my mom with ALS

> because she focused more on that than anything else. However, my

> mom's neuro says she has PLS and we are going with his diagnosis. He

> sees her every 6 weeks and we only saw the lady dr. one time. I try

> so much to be optimistic and think that she will be here with us for

> many more years but I am scared to falsely reassure myself. It's like

> if I let myself believe what the doctor said then I will be prepared

> when it finally happens. I don't know what to think or feel anymore

> but I will definitely try to be more optimistic.

>

> Thanks everyone.

>

[Guest guest]

You wrote:

I try so much to be optimistic and think that she will be here with

us for many more years but I am scared to falsely reassure myself.

It's like if I let myself believe what the doctor said then I will be

prepared when it finally happens. I don't know what to think or feel

anymore but I will definitely try to be more optimistic.

>

>

**********

Hi

If you feel all this anxiety over the mixed signals, imagine how your

Mom feels.

Five years ago I had 3 top neuros tell me I had ALS and would die in

6-18 months. As single Mom, I talked to the kids about who would be

best as their guardian. I do all the will and medical attorney

stuff. Waited...started IMPROVING.After a year they told me that my

case was unusually slow but death was coming....isn't it for all of

us at some time? lol So I traveled to all the islands that I could.

And Waited. In the interims I have had to bury many friends...usually

the ones who assured me they would stand beside of me until my end.

Now 5 years later with what they deem as mild progression, I've been

running a rental business, hosted big family parties, traveled to

new places, and am still the 'strong one' for the whole extended

family.

My point is no one has a guarantee stamped on their rear that there

will be tomorrow.

Play the game of 'what if' until you have all necessary legal stuff

in place. When making major decisions throw in a handful (not a

bucket which had turn into doom and gloom) of caution for increasing

physical challenges. Then ENJOY life.

Remember: Life by definition is a sexually-transmitted terminal

disease.

Eva in WV (for now)