First Rheumy appt on 18th, any ideas?

Colleens

Hi , my 1st rheumy appt is on 11-18, any ideas on what to expect? I have been to rheumy's before, but this is the first time for this one and the first time for Lupus. All other times was for FMS (fibromyalgia). What can I expect on a first time appt for Lupus?
Thanks,
Colleen S.
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Dx this year SLE but because of past symptoms and testing I think I've had it 15 years!Dx 1990 Fibromyalgia, depression, OA, migraines, plantar fasciitis, tarsal tunnel synd. both feet.Heart surg '97 for bicuspid aortic valve w/regurg. hi cholestrol.

Jodi · Not So Newbie Joined: 07 Nov 2005 Posts: 6 Location: NJ

Hi Colleens,

I am new to this message board, but my advice would be to bring your file! Hopefully you've kept a nice folder or log of all your diagnoses, procedures, medications ... etc. It might save the rheumatologist (and you) from any duplication of effort. It sound like you've been through a lot, and it will only make you feel bad if he starts from scratch with treatments you've already found to be ineffective.

I saw my rheumatologist for the first time in August, and again in October. I don't know if other people would agree, but I've found him to be MUCH more understanding than my primary care physician. He looked at my file, ordered some additional bloodwork, and began my treatmment in a matter of 2 appointments, where my primary care physician had no idea what to do after a year of visits.

Also, be honest with the rheumatologist. I really do think they want to help you manage the disease, and minimize your pain. I can say now after about 8 weeks that I am starting to feel less pain in my hips and shoulders, and I'm less tired than I was before. I had been having such sharp pain that I couldn't move my left arm at all, sometimes for days!

Don't be afraid to tell your doctor symptoms that you think are unrelated. I'm surprised to find out how many things ARE related. My finger nails turn blue all the time - I've had that symptom for YEARS, but it didn't hurt so I didn't worry about it. Turns out it's related. I get dry eyes, which I always assumed was from the heat (I blast the space heater at my desk because I can't stay warm). Turns out that's related too. I have something called Sjogren's disease, which is another autoimmune disease that is often coupled with SLE.

So bring all your paperwork and tell the doctor everything. It's a new doctor, you have a clean slate. Tell your story so you can get some relief!

Jodi

catlady4520 · Posted: Thu Nov 10, 2005 8:14 pm Post subject: Appt

I would definitely make a list of recent symptoms and also a list of questions. I had a list of about 15 things and made sure my dr answered all of them. I ask about tests/test results/recent symptoms/what is the prognosis? Etc

Let us know how it goes!
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Catlady4520

hatlady · Posted: Fri Nov 11, 2005 1:09 am Post subject:

Jodi might be a newbie, but she gives wise advice!

She was also very lucky - my first rheumy was a jerk #Mad

- saw him once and never went back!

Expect treatment such as she received - someone who listens, who talks with you and works with you. If you don't get that respectful treatment, don't go back. Find another person who is better.

Hugs, and let us know how it goes!

honeyshell69 · Posted: Wed Nov 30, 2005 11:07 am Post subject:

Stand your ground, make a list and dont let the doc minimize what your going through. and the best of luck............. hopes and wishes Very Happy

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michelle