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Appointment request denied
For the past 2 yrs I have spent about 6 months in the hospital, 2 months back to back. Every time with something different. Recently had pituitary adenoma removed and things got worse quickly. First very rare Hemiplegic Migraine with right side paralysis, recurring sepsis, septic shock, internal bleeding, pulmonary embolism, GI bleed and most recent severely rare Hemiplegic Migraine with bilateral full body paralysis with memory loss, slurred speech. 17 doctors, 3 hospitals and nobody can tell me why or what is wrong with me. Adrenal insufficiency, severe anemia (3 transfusions), nausea/vomiting, constipation/diarrhea, severe Hypokalemia, body won’t absorb potassium infusions, interstitial cystitis, stroke symptoms no stroke, severe loss of hair, loss of weight without trying (28lbs/3months). These are just a few of the things I am dealing by with. Doctors, neurologists literally saying they don’t know what to do for me anymore. Imagine waking up everyday scared of your own body and every doctor giving up.. I felt like Mayo was my last hope to get some answers but was denied. Now I’m hopeless & exhausted. I need help, what should I do next
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@hopelessag, I am so sorry to read everything you’ve been through. It sounds incredibly exhausting and discouraging to have so many serious health events while still not having clear answers.
I wanted to mention that a denied appointment doesn’t necessarily mean you have reached the end of the road. Sometimes appointments are declined because the needed records are incomplete, the requested specialty isn’t the best fit, or Mayo believes another approach is more appropriate based on the information they reviewed.
If it were me, I would contact the appointment office and ask whether they can explain the reason for the denial and whether there are additional records, testing, or a different specialty referral that might change the decision. Your current physicians may also be able to help coordinate another opinion at a large medical center that specializes in complex cases.
In the meantime, you’re among people here who understand what it’s like to live with uncertainty. While we can’t diagnose, we can listen and share experiences. I am so glad you are here. Welcome! Has one physician, such as your primary care doctor or another specialist been able to help coordinate all of your care, or are all of these specialists working separately?
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10 ReactionsI agree with Janell. The reasons are important to understand. Perhaps others can advise how to obtain help finding the best care for your serious and exhausting condition?
Seems like a specialist above a primary care physician would be needed as a point man. We wish you only the best path forward.
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5 ReactionsJanell
I really appreciated Your words "You're among people here who understand what it's like live with uncertainty. " It is a shared experience and a practice which I recognize.
Hopelessag: I wish you progress and peace in your so difficult situation and process. Perhaps Palliative Care can be of some assistance. Palliative Care is not Hospice and is often helpful working with those who have serious and complicated diagnoses with various co-morbids. I have found them to be helpful. Hopefully a Palliative Care team will become available and helpful for you.
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2 Reactions@zmarkv I agree with you. I was refused twice before my neurologist referred me to Mayo.
I was called and accepted for consultation.
Wishing you all the best.
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5 Reactions@hopelessag, welcome to Connect. That is a gut punch to not being able to get an appointment at Mayo Clinic, especially when you emotionally invested your last hope in finding answers. Unfortunately, Mayo Clinic receives more requests for appointments than available openings.
There are a few things that you can consider, like getting your doctor to submit the referral for you. See more tips in this discussion:
- Can't get an appointment: Any tips on what to do? https://connect.mayoclinic.org/discussion/cant-get-an-appointment/
Did you see that there is a support group here on Mayo Clinic Connect specific to headache? I invite you to join the discussions here:
- Headache & Migraine group https://connect.mayoclinic.org/group/headache-migraine/
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2 Reactions@jlharsh thank you kindly for your response. I see my primary doc tomorrow so I hope she will be able to send a referral. She’s been great and doing the best she can. It just feels like nobody talks to each other even in the hospital. I have all my records since this started on email. I found the “team” care that the Mayo does sounded like I could really find some answers or at least some relief. I truly appreciate you and welcoming me to the group. 😉
@zmarkv thank you kindly 😊
@maeve115 thank you so much for your message and suggestion. I would have never thought of that. It’s hard to focus on my health when I have zero income. Can’t work, can’t get unemployment, short term disability expired and long term takes almost a year. I just don’t understand how we are supposed to manage this way.
It’s just so heavy. I truly appreciate your message, I will start looking into that now.
Wishing you peace and wellness
@ga29 I will try to get mine to as well. Thank you 🙂
@colleenyoung thank you so much Colleen. I appreciate you taking the time to send me this info. I will make sure I go to my doc tomorrow prepared with this info.