Re: NOT WANTING TO WASTE A DR'S APPOINTMENT

[Guest guest]

, go to www.sarcoidosissharma.com and print out his page on sarc questions. He also has a page on what to ask the doctor. Dr. Sharma is one of the top 2 MD's on sarcoidosis and is an excellant resource for all of us. The other excellant site is FSR--Foundation for Sarcoidosis Research. www.stopsarcoidosis.org. Both have excellant resources (some directly from us) as well as brochures you can order.

These two sites are where I go when I need answers, much of the time. Don't hesitate to use them. We also have all this stuff in our ARCHIVES, and I know Darlene is going through and trying to get it into easy access format. (Darlene is the other owner.) You'll also hear from all our wonderful moderators, Debbie, , Marla, Rose and Kim. All of us are living with sarcoidosis-- and we "tag-team" so that no one gets too burnt out, and if one of us is not able to help out because we're wiped out-- the others step in.

These sites will give you info to take with you-- and then you can help make an informed decision about your health care. What I do want you to do is get copies of your MRI's and CT's-- and any lab-- so that you can hand carry them from appt to appt-- and also so that we can help you understand what the reports are saying. I think the pulmonologist is doing a good thing in getting the PET scan, along with PFT's and exercise tolerance tests.

It is possible that some of the fat feet is because your lungs are involved, and that right now your heart is working hard to get the fluids out of your system- but until we know what is going on- I wouldn't even take myself to that place-- it's not worth the worry when you are still in the early stages and this can be controlled with the right diagnoses.

Whew,

Tracie

NS Co-owner/moderator

NOT WANTING TO WASTE A DR'S APPOINTMENT

I'm wondering... .I have to see my internist today.....He won't be happy to hear that I haven't taken any of my steroids he prescribed.. ..since this sarcoid is all new for me I wanted to be 100% researched before I jumped into ANY medication or treatment for that matter.....not to mention, we don't even know exactly WHICH kind of sarcoid I'm suffering from.....all i have had was CT scans, no biopsies, no PET scans.....I have many symptoms of sarcoid but I'm finding that there are different types.....I don't know what to do today when there....what will I get the most benefit from while there???.... .what are my topics of discussion.. ..the pulmonary Dr. is trying to get a PET scan approved....I hate to sound like such a baby....I am only into this 3 weeks....Hugs,