Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.


How do I get in to see a sclero expert?

  • Please log in to reply
9 replies to this topic

#1 Erin M.

Erin M.


  • Members
  • Pip
  • 2 posts
  • Location:Western North Carolina

Posted 12 July 2008 - 09:08 AM

I am desperate to find someone who can figure out what's wrong with me. I strongly suspect it's diffuse scleroderma, but my ana is negative so no one is listening. Meanwhile, in a matter of months I have gotten much worse. It just doesn't stop. I was wondering how hard it is to get in to see a scleroderma specialist? I live in NC so Duke is not too far away. I'm not far from Emory in Atlanta either. Do I need to have a previous scleroderma diagnosis or get a physician's referral or can I just make an appointment? Any recommendations in the NC area? Has anyone been to Duke for help?

I am floundering here. Any advice or insight would be a blessing.


#2 Sheryl


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,023 posts
  • Location:Brooklyn, Michigan

Posted 12 July 2008 - 09:45 AM

Erin M.
Welcome to our Sclero forums. You can go to any specialist without approval of your family physcian. But, it may not be paid for by your insurance. Your insurance company has mandates and if your family physcian has to give approval then you either go above his/her head and then you May have to pay all out of pocket costs.
I went above my doctors wishes because another doctor told me I had scleroderma. My family physcian didn't what this information on my records for some reason. So, I paid out of pocket to know what was happening to my body and what could and should be done about it. My ANA is negative. If you don't happen to be in a flare then your ANA could be negative. I have Limited SSc with Crest. If you make an appointment make sure it is with a rheumatologist that is a Scleroderma specialist. Give us some background information on your situation, and what is going on with you at the moment and we may be able to give you more ideas on what to do.
Strength and Warmth,

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#3 smurfette


    Silver Member

  • Members
  • PipPipPipPip
  • 148 posts
  • Location:PA, USA

Posted 12 July 2008 - 10:20 AM

I agree with Sheryl about the insurance requirements and about finding a Scler specialist. You are near two great hubs so you should be able to find a team that specializes in the disease. A team approach that includes a Rheumatologist and other doctors who understand the disease and deal with your particular areas of issue is helpful because they can consult and work together. My team consists of a rheumatologist, GI doctor and Cardiologist. They are all at the same medical center and the rheumatologist and GI doctor specialize in Scler which is important because my most difficult symptoms are in the gi areas. My cardio guy is a good friend and my cardio problems are not scler related, but he is part of the same med center and team so he can get the reports easily. He is also extremely bright so I trust him to sort things out for me. A team approach can really keep things focused and centralized and you are not dealing piece meal like the proverbial blind men and the elephant.
This disease can effect so many organs and systems it helps to have a team so that you can be dealt with as a whole person and can have one doctor coordinating all of your care. However, in todays world you are the main gate keeper so you will really be the ultimate overseer of the whole treatment plan. I suggest going to the appointment with a note taker so you can just listen and try to grasp what is being said. Afterwards, review the notes and keep a calendar of tests and appointments so that you can make sure that you are on top of things. When you have questions write down both question and answer and keep a file. Write down meds you have been on and how you felt on them. I always forget so I keep a list. It is important to keep a list of tests and when and where you had them - you can wind up having them over too soon for your insurance to cover if they are not ordered with the appropriate language.
I have found this board a comfort and full of knowledgeable and caring people willing to share. They are all so kind. They are a wonderful resource for information and support. I wish you luck!

Chocolate, It isn't just for breakfast anymore!

#4 smac0719


    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 377 posts
  • Location:Tampa, FL

Posted 12 July 2008 - 11:07 AM

There is a Sclero specialist that I see in Charleton, SC at Medical University of South Carolina (MUSC). He is listed on the site under the Sclero Experts link. I think you need a referral from a physician, but I really like him and he is very knowledgable of the disease and the related autoimmune diseases.
I may have Scleroderma, but Scleroderma doesn't have me!

#5 Bird Lady

Bird Lady

    Silver Member

  • Members
  • PipPipPipPip
  • 118 posts
  • Location:Southport NC

Posted 12 July 2008 - 12:46 PM

Hi Erin M., I'm In NC and have been to Duke. I have sclero ssc. I have the greatest doctor. His specialty is sclero and lupis. He got me into the SCOT study which I believe has done wonders for me. Where are you in NC? PM me and I'll give you more information. Good Luck, Birdman
Hugs for All,

Julie (Bird Lady)

#6 jefa


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,284 posts
  • Location:Scotland

Posted 12 July 2008 - 11:06 PM

Hi, Erin. I'd like to welcome you to the ISN Sclero Forums, a great place for information and support. On the Medical pages you will find our list of Scleroderma Specialists. The one from North Carolina is:

Institution: Duke University Medical Center
Suite 09, Baker House, Orange Zone, Hospital South
DUMC Box 3145
Durham NC 27710

Coordinating investigator: E. William, St. Clair, MD


Other Local Participants: Keith Sullivan, MD


Telephone: (919) 684-2193
Fax: (919) 681-8298

Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#7 adensmore


    Senior Bronze Member

  • Members
  • PipPipPip
  • 36 posts
  • Location:Raleigh, NC

Posted 13 July 2008 - 05:51 AM

Dr. Shanahan left Duke June 30, 2007. Dr. E. William St. Clair is now the head of the Rheumatology department at Duke. He has been my doctor since Dr. Shanahan left Duke and I have been very pleased with him. He is a great doctor and once you get to know him, he is a very caring man. I highly recommend him.

April in Raleigh NC

#8 Peggy


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 633 posts
  • Location:Minnesota

Posted 13 July 2008 - 05:57 AM

As long as your insurance is taken by the doctor you are going to see you should be OK. Call the 800 number on the back of your insurance identification card and ask if you need a referral. If you do your local general doctor should be able to refer you to the doctor you choose. Then get the referral to the doctor you found in your area. If you don't need a referral and have to get in sometimes that can be difficult and take a long time. Call and ask to speak to the assistant to that doctor and plead your case to her. I did that over a year ago to the neurologist who is the leading specialist in peripheral neuropathy in my state. His assistant got me in right away and thank heavens. He did test after test and couldn't figure it out but wouldn't give up like other doctors had and referred me to the rheumatologist who immediately diagnosed me.

I wish you luck and don't give up. You need to fight for yourself as no one else will.

Warm hugs,


#9 Gidget


    Silver Member

  • Members
  • PipPipPipPip
  • 201 posts

Posted 14 July 2008 - 02:23 PM

I agree with Peggy as far as contacting the assistant and pleading your case as they can at times schedule you in right away. I've seen this work well before. good luck Gidget

#10 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,283 posts
  • Location:Minnesota

Posted 15 July 2008 - 03:07 AM

Hi Erin,

Some of the scleroderma centers will see patients who have not been diagnosed yet; some of the newer centers might accept only patients who have already been diagnosed. You need to call the center to find out what their appointment policies are.

It often takes a few months or more for the first appointment at a scleroderma center, but thereafter usually appointments are easier to get. For the first appointment, part of the lag is to allow time for them to request all your medical records and to perhaps even have more tests done locally, beforehand.

Generally speaking, you're better off with a referral, because they are probably going to request your medical records anyway, and because some insurance companies won't cover the appointment without a referral.

It might help to take our Scleroderma Symptom Checklist to your local doctor, along with documentation for each of the related symptoms that you have. You'll notice that "positive ANA" is not one of the items on the list. Also you can review the Diffuse Scleroderma diagnostic criteria with them to see if you qualify, or not. Here is the excerpt:

Diffuse Scleroderma is diagnosed whenever there is proximal tight skin. Proximal means located closest to the reference point. And here is where the plot thickens for Scleroderma patients who have skin tightness only between their wrists and their elbows, because there are two different definitions of what the reference point should be when bandying about this proximal word:

1. The American College of Rheumatology defines proximal tight skin as skin tightness above the wrists.(1)

2. Dr. LeRoy defines proximal tight skin as skin tightness above the elbows. Europeans and many centers in the United States use this definition for proximal tight skin.(2)

Therefore, someone with skin tightness only between their elbows and their wrists will receive a diagnosis of either Diffuse or Limited Systemic Scleroderma, depending on which definition of "proximal" their doctor uses.

The diagnosis is clinical, and requires no laboratory or special testing. --

You must have an awful lot of medical knowledge to have zeroed in on diffuse scleroderma right away. Most of us flounder for years without having the slightest clue about scleroderma or similar autoimmune diseases. Be extra cautious if you have decided upon diffuse scleroderma based only on casual web surfing -- especially if you don't meet the diagnostic criteria -- since there are many other, far more common diseases with similar symptoms that you may wish to consider first.

However, if you feel you do meet the criteria, or if you have significant formal medical training, which helped you identify this as the culprit, then perhaps you could seek a new/better local doctor to help with your referral.

Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.