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Can't get an appointment: Any tips on what to do?
Visiting Mayo Clinic | Last Active: Aug 12 12:33pm | Replies (193)Comment receiving replies
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.
Replies to "My 31 y/o daughter has been on a downward spiral of worsening health over the last..."
@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.
https://www.lymedisease.org/lyme-basics/co-infections/babesia/
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?
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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.?