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Re : PH Question

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I am still trying to get doctors to put me on SOMETHING for the PH I was

diagnosed with in October but actually have had since June. The doctor is

hesitant because he doesn't want me passing out or something...Where is his

head. So there is no treatment for me??? I am having a bad time with breathing

for a few months now and I think I have heard from others it would help being on

this type of medicine not only the breathing, but allow me to walk around better

with less SOB. Talk about mismanaged care- I have been on 4LPM since June of

2007. The oxygen company told me today they only received a script for 2 LPM.

Our power was out and I asked them to call the doctor since I was saving my cell

phone for emergencies. But imagine that-all this time and the doc doesn't even

KNOW what I am on??? I see him every 2 months! Guess I have to make some

serious decisions here-soon. Getting pretty sucky breathing. Bad enough with the

muscle disease and trying to fight everything all at once. Thanks for

listening....wish doctors were better around here...........

I HOPE EVERYONE HAS A HAPPY HEALTHIER NEW YEAR!

Diane PF,Raynauds,Sjorgrens,PM 2006 PH 2008

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