Scleroderma/Systemic Sclerosis

@kimberlyf I suggest that you call the 2 organizations who keep lists of doctors who can help with ‘rare’ diseases and.or autoimmune diseases.
https://rarediseases.info.nih.gov/. GARD. Genetic and Rare Diseases organization
National Organization for Rare Diseases. NORD https://rarediseases.org/
Please check this out! How far might you be willing to travel if you find a good doctor?

I hope you get into Mayo also. I’m so very sorry! My thoughts are with you.

Can you travel to a different Mayo Clinic? There’s one in Rochester MN, FL, and. Phoenix AZ. If you can get into one ask the person looking at the schedule to see which specialty can get you in first. It doesn’t matter where you start as the initial Dr will bring in all the other specialists on your case. Another option is to go to your closet University teaching hospital. They are usually well versed in less than common conditions. I would be a pest about getting a referral (call every day or show up at the office and say you will wait for it to be done. Assertive persistence is needed here!
I’m so sorry you are so sick and are having such a hard time getting help. Our health care system seems overwhelmed, understaffed and inconsistent. Good luck getting a referral and keep us posted on your progress!

Hi Kimberly, If you get a referral and go to Mayo Clinic ask to see a Rheumatologist whose area of expertise or area of focus is Systemic Sclerosis. Systemic sclerosis is rare and not all rheumatologists are equal. Even at Mayo Clinic. If you can, I would go to the University of Michigan Ann Arbor. They have a Systemic Scleroderma Program that is highly respected. If you look at the research you will see many publications by the U of MI and very few by Mayo. And primary care providers have very limited to no knowledge. Good luck.

Hi, actually im on disability with very limited funds so Mayo in Fla was my only hope. I found out they don’t require a referral so I called them myself. They’re not contracted with my ins provider but I was told if I were on oxygen they could help me. The thing is I do need to be on oxygen but can’t get to someone to help me. I have ILD due to my SSc that is progressing so fast I just feel so defeated. I feel that I need someone to advocate for me that is familiar with how everything works.

Hi, I did try to get in with the pulmonologist first instead of rheumatology. Although the person the day before told me I may have to pay a little more out of pocket, the person I just spoke with said Mayo isn’t contracted with my insurance carrier. I asked about financial assistance but that’s only for those without any insurance. She said they still help some people if they meet the criteria and checked for me. She said if I were on oxygen they could help me The thing is, I know I need to be on oxygen but can’t get to someone to help me with that. My ILD is progressing and I don’t know what to do anymore. I wish they would allow me to come there and they’d see that I meet that criteria and I need help. This disease is eating me alive and I’m just stuck as time keeps passing. I feel I need someone to advocate for me or something. I don’t seem to be able to get anywhere on my own. I don’t have any kind of support around me. I’m on my own with very little resources

@kimberlyf I must take a minute and agree with @slkanowitz when she suggests going to a university hospital or comprehensive medical center. That’s exactly what my husband had to do before I was diagnosed. I had made numerous trips to the ER because of unrelenting nausea and a weight-loss of 20 #. The ER docs just said I was dehydrated and would send me home. In the meantime, my husband was calling the University of CO to get an appointment for me. On my last ER visit, I was unresponsive so they paid attention to me but they still didn’t know what to do. My husband insisted that they call the university hospital and get advice on how to treat me. As soon as I was transferred to rehab, I got an appointment at the university. After 6 years the university still manages my care!
What do you have to lose by calling a university hospital or comprehensive medical center?

You can go right on the mayo website and fill out the forms to get a call back. I filled it out on a Saturday and got a call the next Tuesday. Just keep pushing. Don’t let your doctors sit on their butts. Even if you have to call often just so they do their job. I wish you the best. I have had a nightmare of a time over the years trying to get my husband proper care after he was diagnosed with acute transverse myelitis. I truly believe if he had proper care from the beginning. His life would be different today. God bless. Keep pushing forward.

In m experience @kimberlyf you really need a rheumatologist with expertise in scleroderma. They will refer you to cardiology, pulmonology and nephrology so if you go to one of those first, you can bring the info from that appointment and any testing, to the rheumatologist.

Is your PCP involved? Even if I don't need a referral for insurance, sometimes I meet with PCP and they succeed in getting me in with specialists with a phone call.

It sounds like there isn't even a cancellation list! Here in Boston rheumatology triages and you would get in faster than some others.

Are you in Florida near Jacksonville? These folks might help https://scleroderma.org/treatment-centers/ It looks like Mayo is the only center listed for FL https://scleroderma.org/treatment-centers/ I hope your PCP can advocate with info on severity and pace of your disease.