Can't get an appointment: Any tips on what to do?

Wow, that's a shocker that Mayo Clinic is full. I suppose that was bound to happen since Mayo has such a great reputation for excellent medical care.

@acb I'm sorry that your mom was not able to get an appointment. I have heard that Mayo gets a lot of people applying about neuropathy and general medicine. It may help if you can start with a specialist for a specific problem instead of a general application. I was accepted at Mayo for spine surgery. I had been turned down by 5 local (non Mayo) surgeons and my case had some unusual symptoms that were being missed, so that did help me get into Mayo as a surgical patient. I referred myself. Sometimes your own doctor can help refer a patient to Mayo. There are also doctors trained at Mayo practicing elsewhere, and there is a Mayo Clinic Care Network where specialists have a relationship with consulting Mayo Clinic specialists while providing care at other hospitals nationwide.

MAYO CLINIC CARE NETWORK
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
The Mayo Clinic Care Network helps keep care local by providing guidance and answers to many questions that might otherwise require a referral to a specialist. In many cases, this spares patients the expense and inconvenience of additional appointments and unnecessary travel. If specialty care is needed, patients can be seen by local providers or referred to Mayo Clinic. If you scroll this page down there is a member map on the left side.

I have also heard that Cleveland Clinic is similar to Mayo is expertise and patient care. I would have contacted them if it didn't work out at Mayo. Would she be willing to try applying to one of the other Mayo campuses? There are 3 campus locations, Rochester, MN, Jacksonville, FL, and Phoenix, AZ.

Can you share specifically what type of care your mom is looking for?

@acb Jennifer provided very good advice as well as options for other clinics such as Cleveland Clinic.

Did you mom's doctor refer her to Mayo Clinic? I go to Mayo Clinic in Rochester for cancer care and my doctor submitted a referral to Mayo in Rochester.

What kind of medical care is your mom seeking? Would you please come back here and let us know?

Thank you so much for your response, this is so helpful. I wish I could tell you what kind of expertise we’re looking for, but we’re not entirely sure what’s wrong. It could be something in her brain, it could be ALS, it could be something we haven’t considered yet. We were hoping that Mayo could help us pin down a diagnosis. I am going to share all of this information with her, thank you so much!

Her doctor did refer her to Mayo, and for the most part we’re seeking help with a diagnosis. She has been to several specialists at home that cannot tell her what’s going on or how to fix it.

@acb Can your mom travel to Jacksonville, FL or Phoenix, AZ to the other Mayo Clinics campuses? I'm hopeful for you that with persistence your mother will be seen at one of the clinics. I've seen other posters here on Connect who have tried another time to get in to Mayo Clinic and been successful. Would you let us know?

Have you considered contacting a ALS Association for any possible referral help in ruling in or out ALS? I Googled ALS Association & a Western chapter appeared, I put Other Chapters in their search box & it gave links to the numerous states that have local chapters. The CDC also provides a list of other organizations that Support ALS Patients and Caregivers. Perhaps support organizations might be able to help point you in useful directions to receive a definitive work-up to rule their condition in or out.
Years ago I sought to see a Mayo Clinic Specialist. I was told I needed to be seen by Internal Medicine first. I was placed on a wait list to see one. Eventually I saw a Internist several times over the years. I have since received a letter that they moved on to a specialized practice area, & was given the recommendations provided by the volunteers here for future care. When I tried a suggestion, I was told to try contacting the specific specialty clinic I wanted to be seen in directly,

I had read years ago that Dr. Noseworthy, the Rochester CEO at the time did not want Medicare patients travelling from out of the area any longer. And that private insurance patients would now be given priority (barring those particularly challenging cases). I've also read that if the patient has been utilizing their advice matters too. No, I didn't increase exercise (Due to wildfires by the way). My advice for whatever it is worth, don't put all your eggs in one basket.

I just received an email this morning, I was denied. Small fiber neuropathy FGFR3, absolutely reeling from this news as is my husband. No doctors to help me where I am, can’t get into a neurologist specific to my gene issue for another 6 months. Feeling like a lost cause….anyone else?

@takingcare, I can certainly understand your disappointment being denied an appointment. Getting that letter is hard. But there may be options for you.

Some of the top tips members share their tips on getting an appointment include:
- Try a different Mayo Clinic campus. Sometimes a particular department may be at capacity at one location but not another.
- If you self-referred, ask your PCP or current specialist if they would make a physician referral.
- Seek care at a Mayo-affiliated facility in the Mayo Clinic Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

I also invite you to join the discussions about small fiber neuropathy in the Neuropathy support group here: https://connect.mayoclinic.org/group/neuropathy/

Here are some specific discussions to get you started.
- FGFR3 levels are high any treatments? https://connect.mayoclinic.org/discussion/fgfr3-levels-are-high-any-treatments/
- Small Fiber Neuropathy: What helps? https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/

@colleenyoung can you explain what it means to be a Mayo-affiliated facility in the Mayo Clinic Care Network? Do these groups have some sort of connection with Mayo doctors or resources? How does the affiliation give them a benefit for the patient?