[Lily80]

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.

 

[ROSJAC]

Lily, I have not personally been to C.C., however my step-mom went their and Mayo both. She lived near Pittsburg, Pa. She went because of CHF(she had a pace-maker) and said both clinic's were helpful and thorough. Sadly, we lost her July 07,she never recovered after open-heart surgery in Pittsburg.C.C. is known more for heart conditions, while Mayo for mysterious illnesses. You see a team of Doctors at Mayo that confer on your problem.The Magee-Womens Hospital at the University of Pitts. Med. Center has a Lupus center.(www.lupuscenter.org) Sorry I could'nt be of more help. Take care, Rosie

 

[Lily80]

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.

Thanks for the info!

 

[ROSJAC]

Me again, Sorry you keep hitting these roadblocks. My Dad still lives 40 miles outside Pittsburg. When Dad learned from my son that I am struggling more with my breathing(lost 40% lung function thus far due to SLE)my Dad 's doctor called me from Pa. and said because of my family's concern, he could get me into Mayo. I told him I needed to speak to my Rhumy first before I decided. When I spoke to my Rhumy, he said Mayo would'nt do any more for me than what he is already doing.So I did not go. My point of all this is have you discussed going to Mayo or C.C. with your MD and will they make these calls for you? Many doctors have connections to both places thru friends or they have done their residency's there. Could you share with me how you got an appointment at McGee in Pittsburg as I have considered going their myself. Did you just see a doctor or did they do testing and did it involve more than 1 day?
When my Step-mom went to Mayo, she was there for several days and stayed in a hotel across the street. She said they repeated many tests she had already had. If I go to McGee, At least I have a place to stay. Yhanks for any info. you are comfortable sharing.
Good Luck and Best Wishes, Rosie

 

[Lily80]

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!

 

[ROSJAC]

Thanks for the info.,Lily. I was dx. with SLE 11 years ago, but I believe it began 20 years before that. I always had lots of joint pain , blood in urine, many bouts of plurisy and then dx. with Raynauds. My Md. was elderly and Lupus was not in his vocabulary. I recently found an old medical book from 1975, and it said the life expectancy for Lupus was 5 years. Thankfully, we have made great strides since then. Kidney involvement seems to affect many but some of us do have lung involvement. I was having a CT scan for something else and that is when I was told Lupus had entered my lungs. The sooner you can get a proper dx.,the better. My heart goes out to all of you that can find help in connecting all the dots. Maybe if I had been Dx. sooner, my quality of life would be better. Take care and Please keep me updated on your journey. Rosie

 

[Pink Pearl]

Hi, I don't know of any rheumy's at the Cleveland Clinic, but you do have one of the most incredible neurologists there in Stewart Tepper, MD. He was in Seattle before moving to CT. Now, I hear he has moved to Cleveland Clinic.
I can highly recommend Dr Tepper should you need a neurologist who specializes in dealing with headaches. Our loss is your gain.
Sally