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nan

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Hi Nan!

 

My Dr. at Johns Hopkins is Fred Wigley. I'm also involved in a lung study with Dr. Laura Hummers. They're both awesome. Actually, I'm going up there for my check-up in a couple of weeks. "Going up there" implies taking 2 planes and going through immigration at Miami airport... quite a hassle. But I'm very satisfied with the care I'm receiving.

 

I hope you start feeling better soon. I know what that fatigue can feel like and it's not the best feeling in the world.

 

Healing wishes,

 

Claudia

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Claudia,

I asked to be seen at the Scleroderma Center, but they wouldn't see me. I went to the Rheumatology dept and saw Dr. Saleh. I really do like her. She did call her Scleroderma colleagues after examining me. I figured they didn't want to see me because I hadn't been diagnosed with scleroderma yet. Good Luck on your visit! That's quite a trip. I am only 3 hours away.

Nan

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I have Lupus and an overlap of limited Scleroderma.

 

The rheumatologist I was seeing for 20 years said I was a MCTD with SLE and CREST. I have a high positive RNP-243 which is specific for MCTD. Rheum said my hands showed the characteristics of CREST about 10 years after my SLE diagnosis.

 

New rheumatologist one year ago who is 30 says my diagnosis is SLE with an overlap of limited sceroderma. I also have antiphosholipid syndrome. Also have positive ds-DNA which is specific for Lupus.

 

I have been a challenge to treat. I am on 9 meds presently and see rheumatologist and dermatologist often.

 

Sarah

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Hi again Nan. That's really weird that you didn't get to see the doctors. at the Scleroderma Center. But you know, they've been changing the way things work up there.

 

Dr. Wigley, for instance, is only seeing 6 patients a week, from Tuesday-Thursday. Maybe they don't have the capacity to take in many new patients with that set-up, I don't know. I do know that last time I was there, about 6 months ago, I had to wait almost 2 hours to see Dr. Wigley, and there were lots of patients waiting in the area after me.

 

I started going there 3 years ago, and they hadn't diagnosed me yet. I'm glad you're seeing a good Dr. you're happy with up there. It's a great hospital.

Best,

 

Claudia

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