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nicolehinkel
08-28-2011, 01:09 PM
Tomorrow is my first appointment with my rheumy. What should I do to prepare? Should I compile a list of all my medical problems or see what he asks? Should I compile a list of all the meds I have been on? Should I compile all the tests I've had and the results to make it easier for him, so he doesn't have to go through all the results that hopefully my gp sent on Friday since much of my area is without power due to Irene. What questions should I ask him?

steve.b
08-28-2011, 07:55 PM
yes all of your ideas are good.
other things to think about include,
a pain diary, letting him know what hurts and when.
pictures of your rashes etc.
write down your questions, before you get there.
(you hear so much during the appointment, you often will forget your questions)

hope all goes well for you.

tgal
08-28-2011, 08:26 PM
I am sooo sorry I haven't been here earlier! Weekends are usually slow but with the bad weather on the East Coast it is even quieter then normal.

As Steve said, all of your ideas are great! It is so important that you write down all of your information. Questions that you have, information about what has been going on with you. Once you walk in there it can be overwhelming. Whether they give you an answer or whether they don't it is an emotional time. Your brain gets all muddled up trying to understand what is happening. I would also suggest writing down what the doctors said. I find that sometimes I forget it by the time I got out of there. Whether it is from brain fog, being emotional or simply from medical phrases that you have never heard before, it really is a good idea.

Please let us know how it goes tomorrow!

nicolehinkel
08-29-2011, 05:59 PM
Ugh I am so frustrated. So I went to rheumy and he says he isn't sure what I have even though my primary and my orthopedic and infectious disease doctor say lupus. I have to see another lady in the practice in a month from now. Meanwhile I have to get my eyes checked and he is starting me on planquenil. If I don't have it, why would I start this medication. Then he tells me I am wheezing after I tell him I have been feeling sick with a sore throat, stuffy head and coughing, but doesn't give me meds. So now tomorrow after spending $60 today, I have to go to my primary and spend $40 so he can listen to me to get the antibiotic I need. So now what?

tgal
08-29-2011, 06:37 PM
Ugh I am so frustrated. So I went to rheumy and he says he isn't sure what I have even though my primary and my orthopedic and infectious disease doctor say lupus. I have to see another lady in the practice in a month from now. Meanwhile I have to get my eyes checked and he is starting me on planquenil. If I don't have it, why would I start this medication. Then he tells me I am wheezing after I tell him I have been feeling sick with a sore throat, stuffy head and coughing, but doesn't give me meds. So now tomorrow after spending $60 today, I have to go to my primary and spend $40 so he can listen to me to get the antibiotic I need. So now what?

Placqeunil is the first line defense against most auto immune diseases. It takes at least 3 to 4 months for you to notice any relief and since AI disease are so hard to detect I think most doctors that are leaning toward a POSSIBLE AI diseases go ahead and start the plaquenil. I know this is so very difficult and I wish I could tell you that you will get all of your next time but I can't. AI diagnosis are so hard to to get because so few doctors understand how to diagnose these diseases and the diseases are so tricky (blood work fluctuating etc) that sometimes it takes months or even years to get a firm diagnosis. The good news is that you at least have a doctor that is pretty sure there are AI issues and starting you on the plaquenil. It helps the majority of us.

As for the rhuemy and the sore throat etc... you will find that none of the specialist w ill do anything for ANY issue that is not directly related to their specialty. Neuro will only deal with brain issues, rhuemy only AI issues etc. It doesn't matter what other issues you have going on they will send you to the GP to handle those. Sorry things are so difficult. Hopefully things look up soon!

nicolehinkel
08-29-2011, 06:43 PM
At least now I understand why he gave me a medication without giving me a diagnosis. Based on the others doctors that have seen me on numerous occasions and all of them saying it is lupus, I am convinced, and it took them a long time to figure it out so hopefully the other person in his office I have to see on the 28th of September will be able to give me some kind of answers like what I should or shouldn't do, what may or may not help and so forth.