Denied by Neurology and Internal Medicine, what now?

Posted by mountainseeker @mountainseeker, May 23 4:39pm

I requested an appointment primarily for Numbness/Tingling/Cold/Pain/Burining in all my fingers, hands, lower arms, toes, feet and lower legs. Figured if I’m going to shell out the money to travel to MN I’d also get seen for a Meningioma or Schwannoma they recently discovered and my rare chronic disorder Idiopathic Hypersomnia diagnosed in 2011. Neurology recommended Internal Medicine instead, but the next day I received a denial (part of which follows):
“Unfortunately, we are unable to offer you an appointment at this time. We recommend you continue your care locally.”

If I could I would continue my care locally, I’ve been trying since January both locally and regionally but am no closer than when I started, I’m still on a “waitlist”. There is a shortage of neurologists in the area and here they have no interest in numbness/tingling issues. Every time it seems like there is hope – something happens like this denial from Mayo. I feel like I have neurology repellent and that neurologists don’t care about my problems. I realize we may never know what it is, but I’d at least like to have someone really try. I don’t feel like I can have the surgery for the Meningioma/Schwannoma until I’ve talked to a specialist about my arms and legs.

Did I get denied because I was asking for too many things? How can I make them understand that I wouldn’t send the money to fly to Mayo if I could find care within 300 miles? I know I can also try other Mayo locations but what can I do to have the best chance at being offered an appointment? I don’t want to be seen as a “problem” or “attention seeker” and burn bridges. Is there a limit to how many times you can request an appointment? Per condition or per patient? Time limits between requests? Could I try applying again with only one of the issues? Which would have the best luck? If I go with the Meningioma or Hypersomnia would that get me in the door to be able to see Neurology about the arms and legs?

I also wondered if Insurance played a role in the denial – the lady in Internal Medicine commented to me that my insurance info was causing red flags and wanted my Medicaid number. I’m 43 and told her I wasn’t on Medicaid or Medicare but it was the only option on her computer. My insurance is part of the First Health Network, wondering if she had run it under First Health instead if that would have made any difference.

Hello @mountainseeker and welcome to Mayo Connect,

I am sorry about your disappointment at not getting an appointment at Mayo. I can tell from your post that you have a lot of rare/unusual health issues. At Mayo Connect we are just a patient-to-patient support group, we are not employed by Mayo, so I could not give you specific reasons why you were not given an appointment. However, I'm wondering if there are any university medical schools in your area that might be able to see you. University medical schools are usually research-oriented and also have a lot of specialists under one roof who can consult together.

Do you have such a facility nearby?

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Hello @mountainseeker, Welcome to Mayo Clinic Connect. Getting the appointment denial letter must indeed be confusing, not to mention disappointing. I recommend that you call the appointment office to get an explanation. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Another possible suggestion might be if you could find a Mayo trained doctor in your area by searching on the Internet and then making an appointment with him/her. If they can’t help you, they might be willing to refer you to Mayo Clinic Rochester Campus. I think the specialized areas are generally harder to get an appointment with but once you have an appointment with any of the generalized medicine areas, they all work as a team to find a diagnosis.

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Hi @mountainseekerI, I agree with everything that @hopeful33250 and @johnbishop suggested. I think you are asking the right questions and should call the appointments desk to get clarification, in particular about the red flags regarding insurance.

Mayo Clinic receives more requests for appointments than available openings. General Internal Medicine and Neurology can be challenging to get an appointment. You may wish to read the comments other members share here:
– General Internal Medicine https://connect.mayoclinic.org/discussion/general-internal-medicine/

You mention you are not seeing a neurologist. Who diagnosed the meningioma? While you can self-refer to Mayo Clinic, have you considered asking a local doctor to make a referral? Have you considered trying to get an appointment at the Florida or Arizona campus?

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@hopeful33250

Hello @mountainseeker and welcome to Mayo Connect,

I am sorry about your disappointment at not getting an appointment at Mayo. I can tell from your post that you have a lot of rare/unusual health issues. At Mayo Connect we are just a patient-to-patient support group, we are not employed by Mayo, so I could not give you specific reasons why you were not given an appointment. However, I'm wondering if there are any university medical schools in your area that might be able to see you. University medical schools are usually research-oriented and also have a lot of specialists under one roof who can consult together.

Do you have such a facility nearby?

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Good Idea @hopeful33250, I did look into that in March. If my insurance would have covered it I would have driven the 6 hours to UW in Seattle. Unfortunately they do not.

@johnbishop and @colleenyoung I will call the appointment office and see if they can give me more details. I’ve been trying to get in to any neurologist here but haven’t thought about seeing a different type of Mayo trained doctor. I’ll see what I can find within a couple hours drive. Does a Mayo trained doctor referral help any more than a non-Mayo doctor?
I haven’t yet tried AZ or FL locations, wanted to get a better idea of why I was denied first so that I don’t make the same mistakes.
I was diagnosed with an Acoustic Neuroma/Schwannoma in the ER after an MRI a month ago. The ENT I followed up with said based on a old MRI from 2006 that is in fact a Meningioma. He is sending me to a Neurosurgeon that he works with – appointment on Tuesday. I just saw a Radiation Oncologist about Gamma Knife who also says it’s an Meningioma. But when I tried to get an appointment with another Neurosurgeon, for a second opinion, he won’t see me because he thinks it’s an Acoustic Neuroma and “that I need to see a ENT.” I’m paying for the Neurosurgeon that will see me out of pocket because he’s not covered by my insurance. But can’t afford to have him do the surgery. Insurance only will cover local ones from the same clinic as the one that denied me. So will have to travel for that now.

Thank you all for your kind words and advice. I truly appreciate it.

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@mountainseeker

Good Idea @hopeful33250, I did look into that in March. If my insurance would have covered it I would have driven the 6 hours to UW in Seattle. Unfortunately they do not.

@johnbishop and @colleenyoung I will call the appointment office and see if they can give me more details. I’ve been trying to get in to any neurologist here but haven’t thought about seeing a different type of Mayo trained doctor. I’ll see what I can find within a couple hours drive. Does a Mayo trained doctor referral help any more than a non-Mayo doctor?
I haven’t yet tried AZ or FL locations, wanted to get a better idea of why I was denied first so that I don’t make the same mistakes.
I was diagnosed with an Acoustic Neuroma/Schwannoma in the ER after an MRI a month ago. The ENT I followed up with said based on a old MRI from 2006 that is in fact a Meningioma. He is sending me to a Neurosurgeon that he works with – appointment on Tuesday. I just saw a Radiation Oncologist about Gamma Knife who also says it’s an Meningioma. But when I tried to get an appointment with another Neurosurgeon, for a second opinion, he won’t see me because he thinks it’s an Acoustic Neuroma and “that I need to see a ENT.” I’m paying for the Neurosurgeon that will see me out of pocket because he’s not covered by my insurance. But can’t afford to have him do the surgery. Insurance only will cover local ones from the same clinic as the one that denied me. So will have to travel for that now.

Thank you all for your kind words and advice. I truly appreciate it.

Jump to this post

@mountainseeker, I think you are wise to find out more details first from the appointment office. Mayo Clinic also has something called the Brain Tumor 48-hour Access program. When you call at any of the 3 campuses, appointments are available within 48 hours http://mayocl.in/1mtmR63. You might want to inquire about it as it would appear Mayo experts could help clarify the diagnosis.

Mayo-trained doctor referrals are not preferred over other physician referrals. Sometimes a physician referral can be helpful because they can provide additional medical information and talk directly with their peers. But self-referrals are equally considered.

Another option is seeking care within the Mayo Clinic Care Network. The Mayo Clinic Care Network is a select group of independent health systems that are granted special access to Mayo Clinic's extensive knowledge and world-leading medical expertise. Carefully vetted and selected for their commitment to high-quality patient experience, care network members share Mayo Clinic's goal of providing patients the care they need, close to home, at no additional cost to the patient. You can read more here: https://www.mayoclinic.org/about-mayo-clinic/care-network

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