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Scleroderma/Systemic Sclerosis
Autoimmune Diseases | Last Active: Oct 12 10:36am | Replies (19)Comment receiving replies
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!
Replies to "Can you travel to a different Mayo Clinic? There’s one in Rochester MN, FL, and. Phoenix..."
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?
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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.