Best Dr.s

Does anyone know where the best places to go for scleroderma are in the US? I would also like to hear other peoples experiences who have traveled out of state. Was it worth. I know the scler. foundation recomends a number of places, but how do you narrow it down?

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Here are some places I have heard about:

Cleveland Clinic
John Hopkins
U of MN
Mayo Clinic

These are just some I have heard of, but of course there are more...people on here will be happy to tell you where to go and where to stay away from.
becjo

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I have seen Dr. Virginia Steen at Georgetown University and she is really good. She is at this time doing 12 clinical trials on scleroderma and has been doing research for many years. She does have a little wait time for new patients but not as long as some drs. Her office is pretty close to Washington DC so the is a chance to see some amazing sites as well. Good luck!!! Also you can email her if you go to Georgetowns website and look her up. She always replys to mine very fast mostly the same day.

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Thanks, so much for the replies. I live in Arkansas, and haven't had alot of luck with the Dr.s here. I've heard there is a Dr. in Texas that is good. I've had my scleroderma for about 10 yrs. or more and have done really well except lately it's starting to hit my lungs. I've never had to take any heavy meds so I'm thinking maybe I should see someone really good before a real crisis occurs.

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Hi,
What are your symptoms of lung involvement at this time?

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I haven't seen a pullmonary dr. yet, but the rumys nurse said there was minmal striations on my xray. I have a chronic cough, shortnesss of breath and lightheadness from time to time. I'm really tired- more than I use to be, however I can still climb stairs and do chores albiet difficult.

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I've seen Dr. Maureen Mayes, in Houston (UT Medical School), and my doctor, in Corpus Christi, is Dr. Adrianna Pop-Moody. Dr. Pop-Moody consulted Dr. Mayes about my ILD. She seems to be in the forefront of scleroderma research, but I think there are probably others throughout the country that are good, too.

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I have traveled to see Dr. Medsger at the U of Pittsburgh a couple of times. The first time it was when I was diagnosed , 17 years ago, and the last time about 10 years ago. I was told, at the time, that he was the one with the most experience with scleroderma. He seems to know a lot about the disease. In those years he was convinced penicillamine (cuprimine) was the best treatment and wasn't that enthusiastic about the newer treatments. I think Dr. Virginia Steen used to work with him and I've heard she was good.

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ANA,
Well thats good to hear 17 years ago and still with us!
You must still be doing something right, please share with us what it is !

Nico2

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My Rhematologist died. Who is the best scleroderma doctor in Chicago?

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I've been thinking about Maureen Hayes since I live in AR. It wouldn't be to difficalt to travel by car. I'm not sure I'm up to airports and flying. Iknow of a lady in AR who said she saved her life and was very impressed with her.

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National Jewish Health--Denver--especially if you have lung involvement. I have seen or am seeing Richard Mehan, Kevin Brown, and Areyh Fischer

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Dr. Kari Connelly at UCSan Francisco is a Dermatologist and Rheumatologist and specializes in Scleroderma and holds clinics for the patients. She is really sharp. I've also read that Stanford has a Scleroderma unit as well, but I don't know anything about it.

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Dr. Chatterjee, cleveland clinic. he manages all aspects of my scleroderma. Consults with the other "ologists when needed. Cleveland Clinic, rhuematology is #2 in the US. I am sure Mayo or John Hopkins are 1.
K

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Thanks for all the replies- keep them coming. I'm still not sure what direction to go. I'm very indecisive and HATE traveling. But feel I need to give it my best shot while I can.

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I would recommend Dr. Franco in Riverside, Ca. A lot of the people on this board go to him for AP treatment. In my case, I go to USC in Los Angeles and am almost in remission.

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Hi Nico2:

I don't know if I'm doing anything right regarding treatments. I don't feel any of the treatments have really helped me. The first 5 years I was on penicillamine but, according to the doctor that prescribed it, probably didn't do much. After that I was on the relaxin trial for 4 months, and that seemed to help; but in a later trial it was decided that it was ineffective. I was for some months on mynocycline (prescribed by Dr. Trentham, it was the year 1998 when this doctor had succesfully treated 10 patients and had published the only article there is on scleroderma and minocycline). The antibiotic did not work for me then.
For about 8 years I didn't take anything, except for treating symptoms: nexium, adalat,etc
In 2006, I tried ilosprost intravenously but the doctor is not sure it helped. I tried viagra last year, but it didn't work (while I was on it I developed ulcers on my heels). Now my doctor wants to put me on Bosentan, but I'm concerned about side effects. I'm also on plaquenil for pain, but again, I'm not sure it works because my joints still hurt. I don't think my experience is very helpful because I can't recommend any of the treatments. I'm still looking! :)
The only thing I can say is to do some research into what doctors offer you as treatments, because sometimes it is not in the best interest of the patient but in the best interest of their own research and professional advancement.

Ana

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ANA, did you ever try methotrexate? that is what I am on

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I am very happy with Dr Elizabeth Anne Ouellette who is an very well known and highly respected Orthopedic Surgeon and was very lucky to find her over 10 years ago. She is at Jackson Memorial North in North Miami, Fla. She has a deep concern for her patients and is always on the "cutting edge" of medication. I am using a machine called IVIVI which is an "electromagnetic(non invasive) therapy( for healing). I usually have ulcers on my fingers from scleroderma and this has helped me to heal and NOT have any more surgery on them. Its an amazing machine!!Its wonderful for arthritis as well. For any other situaions I use Dr Elaine Tozman at the University of Miami, Miami Fla. I have involvement with my lungs ( I have been in remission for many years)I dont know if there are any new drugs out there for this. However, you must tell you doctors about this machine..

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Please learn from my experience--my rheumy was indifferent to my 'minor' lung problems. I listened to him and denied to myself how seriously ill i was. When I went to National Jewish the doctors immediately put me on 02 and started treating my lungs--I lost about half my lung function because of the disease progress and delay in treatment. After a few months on cytoxan I bounced back. There is help. Sometimes we the patients have to be the aggressive ones! I encourage you to see a pulmonologist sooner the better. I hope I am not alarming you, but lung involvement is one of the most serious complications from sclero.

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I finally went to a Dr. Chi in Arkansas (where I am from who is taking my lungs serious andgetting the ball rolling on scheduling tests. I'm past being alarmed but am just hoping and praying I'm not past a point of help. He has a great interest in sclero. and stays in contact with John Hopkins. I've never in 10 years since my initial diagnosis been on any meds specif to sclero despite the fact that my lab work is off the charts. Every Dr. says you look and sound great and send me on my way. "Excuse me, why Have I been coughing every day and am exhausted?" I don't feel so great, but Dr. Chi is finally listening and helping. I am still pondering going out of state,

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