Your Health

[Guest guest]

Ok, now that I have sent you the responses from Dr. Buckner and Dr. Utz, I

have a little to add.

PLEASE, everyone of us needs to take complete charge of our medical care. It

is our bodies and WE need to take charge of it's health. WE pay the doctors

to work for us. We need to be treated in a respectable manner and LISTENED

to. If you find your dr won't even listen or read anything you give him, I

think it is time to look for another dr. I know this isn't easy and it is

very frustrating trying to find another one AND then starting all over again.

I know, because I have been there many times. LOL

I use to let the doctors control me. NOT any more. I want to live my life

to the fullest and boy they had better give me the treatment I deserve and if

they don't know, that's okay too, as long as they TRY to find out and work

with me.

Insist on the baseline tests that we all need. Pulmonary Function Tests, CT

scans if needed, MRI's, hearing test, blood counts, Kidney function tests,

eye exams. We need to know how we stand before anything happens. Then we

will have something to compare to if we do start to have problems. Why wait

too long and not have anything to compare to.

Please take a long hard look and make sure you are getting the proper

treatment. We are in the process of getting a list from drs. that will list

the Drs they know of that are familiar with RP. If anyone has a wonderful

doctor, please give us his name and address and we can post them to our web

site. Any doctor in any specialty that has helped you.

With all of us working together, we are bound to make a big difference in our

treatment and maybe a cure.

I will get off my bandstand now and leave you alone for the rest of today.

LOL Oh, one more thing...Did you ALL order your medic alert

bracelets?????????

hugs