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

My 31 y/o daughter has been on a downward spiral of worsening health over the last 2+ years that nobody has been able to diagnose. She has symptoms of autoimmune disease and also multiple neurologic symptoms that mimic MS. She has been diagnosed with "spondyloarthropathy" and ankylosing spondylitis in order to facilitate treatment, which has not been effective to date. She continues to progressively lose function and have new neurologic symptoms which include severe pain, gastroparesis, loss of mobility, diplopia, nystagmus, and dysphagia (to mention just a few). Where 2 years ago she was running 7 miles a day she is now wheelchair dependent and 90% bedridden. Her case has been described as "perplexing" and "complex" by doctors, which has not been at all helpful or hope inspiring. She has been seen by multiple providers, specialists, and in university hospital settings. So far, all imaging has returned negative for MS and her symptoms cannot be explained simply upon her AS diagnosis. She has undergone bilateral SI joint fusion to attempt to alleviate some of her suffering.

We have applied for appointments to both Mayo Minnesota Neurology (twice) and Internal Medicine departments and been denied by both. We have been told twice to resubmit with additional information, and once told to reapply to a different (IM) department. I'm sorry, but time is precious and every day, or week, or month that goes by, my daughter's health continues to decline. I am feeling very frustrated that Mayo is the leader in the field for solving complex medical issues, and in fact, their advertising promotes this. Yet, when faced with an extremely challenging case such as my daughter's, they deny her care.

Does anyone have any advice about exactly what it is that needs to be done, or said, or who you need to know, in order to get your foot in the door at Mayo? My daughter's life is depending on this, and we have run out of other options for finding a diagnosis. Her health continues to decline at a very rapid pace, and I am frightened.

Hi @staceycddn, as a mom, I can understand your distress.

It sounds like Mayo Clinic thinks your daughter may benefit from the team approach at Mayo, but they need more information to get her started in the right department and initial consult. Were you able to provide the additional information as requested? Was you daughter given a temporary patient ID number to facilitate the submission of medical records etc.?

Hi Colleen. She is getting the standard form letter (email) stating that demand is higher than their appointment capacity. She was denied by the Neurology MS department, was requested to send in a medical summary for re-review in general neurology, and was then denied by them as well. They recommended she reapply again for Internal Medicine since they would then have the ability to refer her out to any specialty areas, but again she got the standard email denial response. She has been assigned an ID # so that the summary has been accessible in her Mayo record. I’m at a loss what to do, and frankly she is losing all hope.

This isn’t an insurance issue, we would be self pay. There is clearly a high need here, and a very unclear medical picture that nobody can figure out. I believe in my heart that Mayo can help her, but we can’t seem to get a foot in the door.

Hello @staceycddn,

I can hear the frustration in your words and I can understand your wanting some answers for your daughter. At this age, she certainly does need some answers.

I'm not sure about Mayo's appointment system, but I'm wondering if you tried going to another campus (Arizona or Florida) if you might get a different response. Once again, I don't know for sure if this would make a difference, but it might be worth a try.

Hi Teresa. Yes, thank you. That is next. I’ve started looking at the process and physicians available in both of the other locations. We applied at Mayo MN first because of their outstanding reputation with MS and immunoneurology. Hers is a very complex case with elements of both.

I hope that you find some help for your daughter, @staceycddn.

Will you post again with an update on your progress in finding an answer?

Yes of course…though still hoping someone will jump in that has had similar experiences and with pearls of wisdom for how to get accepted for an appointment.

Thanks for the further clarification, Stacey. I know that the denial letter reads like a standard form (brush off) letter, but I can attest that demand is high and beyond capacity at all hospitals these days. Our health care system is under pressure.

I wish I had the magic answer for you. I have heard from several others like @artscaping and @jenniferhunter that despite repeated denials, they eventually got appointments at Mayo Clinic. I wish you and your daughter strength in persistence.

Good afternoon @staceycddn.......nice to be introduced to you by @colleenyoung. Her assessment of my Mayo admission requests is accurate. It took me five years from my first application to acceptance. 1. I applied on my own and was denied admission. 2. My PCP referred me and I was denied admission even though I am a Connect mentor. 3. I applied online and during the telephone interview explained that I was faced with a challenging decision that had serious implications for my future health and well-being and which no one else was willing to tackle. In essence, I needed a consultation and help with decision-making.

With acceptance came the message that there was an opening the next day if I could make it. Needless to say, I had my suitcase packed within an hour and was on my way. What a relief.

So, is the third time a charm? Actually, I backed away from an overall total patient acceptance request in a "popular" area and went with a much more definable issue. Whether that would work with others I cannot say. I was desperate and running out of time. Even my PCP was unable to help with my pressing and important issue. She was informed and kept in the loop. And I am able to open and merge both patient portals so that everyone can be kept up to date.

Good luck to you. I totally sense your urgency.

May you find contentment and ease.
Chris

@staceycddn I do understand your frustration and fear about not having answers on what is causing your daughter's symptoms. It sounds like doctors don't know what is going on with her, and I wonder if this is something else, and not MS. I was told by a neurologist that MS can be diagnosed with visible changes on an MRI. If it's not MS, what comes to my mind is something like Lyme disease which is not understood well by mainstream medicine if it has become chronic and hides inside biofilms inside the body. The doctors in the ILADS group of physicians do specialize in diagnosing and treating chronic Lyme. It's a complex problem with multiple co infections and it does mimic MS and is sometimes misdiagnosed as MS. This would be another avenue to explore, and the ILADS group would be outside of mainstream medicine. This is something else to look for or see if it can be excluded, but you need an ILADS doctor who understands this. There is a provider search at the ILADS website. https://www.ilads.org/patient-care/provider-search/

When I ran into trouble and got denials for surgical help, it was because the surgeons didn't understand how to connect my symptoms to my imaging which clearly did show a spine problem with spinal cord compression in my neck. I had multiple pains in random patterns all over my body, and one surgeon even suggested that I could have MS, but he didn't want to help me, it was an excuse. As hard as this is for the patient to hear and myself included, it is hard for the doctors when they don't see a path to a possible diagnosis. They don't want to make a mistake and can't take a risk on something they don't understand. If there is a way to narrow down the problem by excluding problems with similar symptoms, it may help a patient find a doctor willing to help. It was after I found medical literature similar to my case, that it pointed to a possibility that explained the crazy symptoms, that it focused my case into something understandable, and that was when I applied and was accepted at Mayo for surgical treatment. I was right, and my case turned out to be like the literature that I found. I was denied by 5 surgeons who simply got it wrong, and the 5th let his assistant respond to me to refuse surgery by sending a response to my message on the patient portal after I had seen this doctor for 5 months and done every test he requested. That felt awful. I was always researching and picking out a new surgeon for an alternate plan in case things didn't work out. I read their medical literature and looked up lots of research. I was always looking up and searching for terms on my medical records to see what might come up in medical literature. That is something you can do which could open up something else to explore.

Here is some Lyme related information.

Here are some links that describe the challenges with testing for Lyme disease which isn't just one specific organism causing an infection, but many. The accuracy of a blood test is also affected by how long it has been since exposure to infection, and if the body has mounted an immune response against it, and how that would change over time. The Igenex test covers more bands in comparison which you can read about from the link below. For some of the co-infections that accompany the Lyme bacteria, there are no diagnostic tests and the doctor evaluates the patient physically according to symptoms in addition to testing they do. They might test to see how many specific white blood cells are responding to an infection because Lyme can destroy the white cells that are trying to protect the body by fighting it, and the test would show a reduction in the white cells.

https://www.ilads.org/research-literature/controversies-challenges/
https://iladef.org/education/lyme-disease-faq/
https://igenex.com/the-igenex-advantage/

The Western Blot test is not very accurate and does miss diagnosing Lyme Disease. The Igenex lab has more accurate tests. https://igenex.com/ Lyme destroys white blood cells that are your immune system.

Lab in Germany https://www.arminlabs.com/en

Here is a link to ILADS (International Lyme Disease Association) treatment guidlines. https://www.ilads.org/patient-care/ilads-treatment-guidelines/

Here is the Lyme treatment guideline
https://lymediseaseassociation.org/wp-content/uploads/2009/08/BurrGuide200810.pdf

There is an educational documentary call "Under Our Skin" which profiles several patients and their treatment and the controversy about Lyme. Some of these patients were disabled in wheelchairs and this documentary follows their story early on while researchers were trying to figure out what was happening. https://underourskin.com/

Patient story from the executive producer of “Under our Skin”
https://www.vox.com/the-highlight/2019/6/18/18677511/lyme-disease-diagnosis-health

Here is a link that discusses ILADS antibiotic recommendations and for recommended number of days, scroll until you find it.
https://www.tandfonline.com/doi/full/10.1586/14787210.2014.940900

Does any of this give you some ideas about what you can do to change directions to help narrow down what is happening?