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Sclero Docs


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#1 Margaret

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Posted 11 January 2007 - 04:53 AM

Hi, Everyone.....I just had my son to his primary care physician to discuss the past 3 months. He sees no reason to wait till Feb's blood work comes back and then another 2 weeks to see the ped rheumatologist again. He suggested getting him in to a sclero spec now. We live in SE Pa. The ped rheumatologist doctor suggested Dr Medsger in Pittsburgh. One of the other moms said they go to a juv. sclero spec in NYC.....any name/hospital with that info? What about Thomas Jefferson in Philly....it's under the spec list here. Does anyone know/go to the doctor there? His primary care physician said to consider John Hopkins but that is not listed as a spec. center. Philly is only an hour, JH's is 1 1/2 hrs, NYC and Pittsburgh would be closer to 4 hrs each. Driving would not be an issue....just want some info on the centers/doctors......patience is a necessity with my son!!!
Take care, Everyone.
Margaret

#2 janey

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Posted 11 January 2007 - 05:14 AM

Margaret,
Here's our link to Juvenile Scleroderma Specialist. Apparently, it's Dr. Lehman in NYC. I hope you find one for you son. I think it's a good idea to go to a specialist.

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#3 miocean

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Posted 11 January 2007 - 08:39 AM

I went to a specialist at Thomas Jefferson and was very impressed with him. I forget his name, unfortunately. I opted to have my treatment done in New Brunswick, NJ as it is closer. The lenght of the drive can be very important, especially if something comes up like hospitalization. I am happy with my specialist in New Brunswich but would highly recommend Thomas Jefferson.
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#4 Gidget

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Posted 12 January 2007 - 06:59 AM

Margaret,
I have been to both Dr. Medsger at Univ. of Pittsburgh and most recently to Dr. Wigley at Johns Hopkins. Both are very competent and thorough, however, if it were me, I would try to see Dr. Wigley at Johns Hopkins. I think he will give you a thorough evaluation and clear explanation as to your treatment options. All the best. Gidget

#5 Margaret

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Posted 12 January 2007 - 10:31 AM

Janey, Miocean and Gidget......thanks for the responses. I have heard privately, too, and it looks like any one of the four would be an excellent choice. TJ would be the closest. After e-mailing back and forth with Dr Lehman (NYC) we are in a 'wait and see' mode....again....till after the blood work in Feb. The plus side for my son is that both the CT scan (done this past Mon) and X-ray showed no pul. infiltrates or fibrosis. Gastro doctor still can't figure out the bulge in the esophagus, though.
Take care, Everyone.
Margaret

#6 nan

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Posted 20 January 2007 - 02:13 PM

Hi,
Johns Hopkins does have a Scleroderma Specialty Center. I saw a doctor in the rheumatology department there, but they do have a center. I am not sure if it specializes in juvenile scleroderma.
Good Luck,
Nan

#7 Sammie

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Posted 21 January 2007 - 07:31 AM

Hi, This is my firt post on this message board. I see several people in this thread mentioning Dr. Wigley at Johns Hopkins. I live in MD and that is who I see and he is really good. When I was first diagnosed in March of 2006, I called the Arthritis Foundaion for the names of doctors that specialize in Scleroderma and Johns Hopkins was recommended. So I called them and they asked for my records, blood tests cat scans and so on. Once they received them, they called me and said I was eligible to come there. There is certain criteria you must meet before they see you. I am not sure if he is specialist for juveniles, but am betting he is.
By the way I was first diagnosed by me Primary Care Dr and Gastro doctor, My rheumatologist said she didn't think I had it, Dr. Wigley confirmed that I do.

Good Luck,
Sammie

#8 Margaret

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Posted 21 January 2007 - 12:36 PM

Nan and Sammie....thank you for the information on JH. Right now, we're in another 'wait and see' period till the blood tests are done in Feb. Gareth's primary care physician wants me to go to a specilaist now, but the rheumatologist doctor and the juv. spec. in NYC said to wait. On Fri, he got a heart monitor for a month to r/o arrythmia. He keeps telling me his heart hurts, but I think it's his esophagus. I really don't know what is hurting. I have been reading all the posts that I can and so many of you talk about pain.....maybe it's his sternum/rib cage that is hurting? That is where he is always pointing.
Take care, Everyone.
Margaret