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The best Scleroderma Specialist?


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13 replies to this topic

#1 Tonya-Georgia

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Posted 21 August 2009 - 01:20 PM

I live in Georgia and need a referral personally to the best scleroderma specialist. I will drive or fly to get there.
Who is the top guy? Does anyone know? I have seen the referral list, but I want to know who has seen one of these guys.
Are they good? Referrals are the best. I do not want a list.
Has anyone seen the guy in Charleston SC? Has anyone seen the lady at Birmingham AL?
Who is considered the best?

Scl-70 positive 2 times and negative 3 times
c-3 complement slightly low
30 extra cc of pericardial fluid. The heart doctor was my friend and would not have
told me because it is not much if he were not my friend. He did not feel it was important.
He also said it could have come from the football hitting me in the chest while
I was playing flag football. However, my sternum does pop and crack when I lift weights.


Just searching for answers and had a really hard week. I am a very positive person, but this has got me beat.
Tonya

#2 Margaret

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Posted 21 August 2009 - 02:17 PM

Institution: University of Pittsburgh
7 South BST
3500 Terrace Street
Pittsburgh, PA 15261

Coordinating Investigator: Medsger, Thomas A., Jr., MD
Pittsburgh, PA 15261

Telephone Number: (412) 383-8765
Fax Number: (412) 383-8753

Hi Tonya....my son went here and I reallly liked Dr Medsger. He was very thorough and spent a good deal of time with us.
Take care, Everyone.
Margaret

#3 janey

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Posted 21 August 2009 - 03:24 PM

A friend of mine see Dr. Wigley at John Hopkins and loves him! She spent 8 years trying to get a diagnosis from the doctors in the SW and finally went to John Hopkins. The first rheumatologist she saw diagnosed her with polymyositis. Within 2 years after that diagnosis she started developing other symptoms. They called in Dr Wigley and he immediately diagnosed her with scleroderma as well. She's been flying up to John Hopkins for several years now twice a year. She is getting excellent care and says the 2000 miles one way is worth it.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 GocartMoz

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Posted 21 August 2009 - 04:28 PM

I have seen Dr. Medsgar. He is the Dr. who originally diagnosed me. I recommend him highly. I also highly recommend Dr. Joe Shanahan. He is located in Wilmington, NC. His contact info is:

Carolina Arthritis
1710 South 17th Street
Wilmington, NC 28401
Office: 910 762-1182
fax: 910 762-1291


Dr. Shanahan was heavily involved in my treatment at Duke and I cannot say enough good things about him.

While I have not seen Dr. Wigley, I have heard wonderful things about him, as well.

Best of luck

#5 Patty LaFave

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Posted 21 August 2009 - 07:00 PM

I live in upstate NY, and have gone to see Dr. Wiggly. He is at John Hopkins in Baltimore MD. He sees scleroderma patients from all over the country. I thought he was excellent, he spent a long time with me. I do have a local Rheumotologist , but was suprised how much I learned from him that I didn't know. He made a few recommendatiions to my local Dr. and I will continue to see him once a year.
Sorry I can't give you a phone number, but I'm not where I can retrieve it, but John Hopkins does have a website. Good Luck!

#6 Tonya-Georgia

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Posted 22 August 2009 - 01:51 AM

Hi,
I am collecting as much information as possible. Thank you for the referral. I see my primary doctor on Tuesday that can make the referral.
Thank you, Tonya

#7 Tonya-Georgia

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Posted 22 August 2009 - 01:52 AM

Thank you Janey. Referrals are always better. Tonya

#8 Tonya-Georgia

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Posted 22 August 2009 - 01:54 AM

Hi David,
Thank you for the referral. Did you do a drug study at Duke?
Any information is appreciated. Thank you, Tonya

#9 alice1

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Posted 22 August 2009 - 06:26 AM

Tonya, I see Dr. Wigley also and have been for 7 years. and he is a wonderful doctor.
His number is 410 550-7715. alice 1

#10 smac0719

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Posted 22 August 2009 - 08:21 AM

I have seen Dr. Silver in Charleston since 1/07 and I like him a lot. He specializes in Sclero patients with lung involvement, which I do not have, but has seen me without issue.
I may have Scleroderma, but Scleroderma doesn't have me!

#11 GocartMoz

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Posted 22 August 2009 - 07:08 PM

It was called the SCOT study and it is a clinical trial which compares autologous stem cell transplantation vs. Cytoxan treatment. I received a stem cell transplant. If you need any further info just let me know.

#12 Bird Lady

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Posted 23 August 2009 - 12:09 AM

Tonya
Birdman also see's Dr. Shanahan and we think he is great.
BMW
Hugs for All,

Julie (Bird Lady)

#13 Gidget

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Posted 23 August 2009 - 02:31 PM

tonya,
I have seen Dr. Medsger (Pittsburgh) and Dr. Wigley (Baltimore).
I decided to see Dr. Wigley as he likes to RX cellcept while Dr. Medsger does not. At the time of my decision, Cellcept was the "new" drug.
Both doctors are very capable. I have also heard good things about Birdman's Dr. Shanahan.
I use Dr. Wigley to RX drugs/treatments, however, as I live in Florida -- the Mayo Clinic performs the treatments. When I was in CT, my CT rheumatologist would have the treatments done in CT. It is important that no matter who you decide on, that you have an excellent rheumatologist near where you live. Not only will they be helpful should you need them, but they can be an invaluable sounding board when trying to plan out different treatments. In most cases, I think your local rheumatologist will be happy to have you as a patient as it will give him/her and opportunity as to what the sclero specialists are doing and they can see first hand what works or does not. And they get the additional benefit of not having to be responsible for treating you. Good luck. Gidget

#14 Tonya-Georgia

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Posted 24 August 2009 - 01:21 PM

Hi,
Do you remember how much your total cost was to see the specialist? I would just like to be prepared. Was it $1000, $5000 ect?
I had a hard time getting insurance this last time because of the scl-70 positive.
Thank you, Tonya