Have any of you been (undiagnosed or diagnosed) ever been to see any of the rheumatologists at the Cleveland Clinic? I'm just curious if anybody was impressed or not. I have been to the dermatology dept. there and my appointment was short and worthless.
I actually visited the Lupus Center in Pittsburgh last month. Didn't receive a diagnosis, but did get prescribed Plaquenil...still searching for help.
I have called all the mayo locations numerous times...they won't accept me. They say they don't think they will be able to offer more help. Bizarre don't you think...I thought they like to take on the rare cases. I mean I have tried calling probably 10 different times and spoke to 10 different people. I don't understand it, but I've hit a roadblock with them.
I've been having major problems breathing recently....I see you mentioned about your lung function. Is that typical of lupus?
My regular md could care less about me, so I'm sure he wouldn't try to get me into mayo. Maybe my derm. could have some connections.
As far as the Lupus Center, I called and explained that I didn't have a diagnosis, but that I was wanting another opinion/consultation. They asked that I send my medical records. It took about 2 months and I heard back, but then when I did they said that the doctor was interested in seeing me and thought it would be worth my while to travel there. Since you already have lupus, you may not have to send your labs up there to review first. I was then able to make an appt. and scheduling was only about a month out. I saw Dr. Manzi....very impressive doctor even though I don't still know what's definitely wrong with me. But, if I had lupus, I would have a lot of trust in her. Although, they have other rheum. that you can see there. They also will do a multiple consultation if they see fit, I believe. Like in other words, a rheumatologist and a dermatologist may both sit in on a visit, etc. My visit was just a typical doctors visit, so for me no, it wasn't a multi-day visit. But, I don't know if it is different for different people/ailments.
Well, let me know if you need any other info!
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