1. < Heart & Blood Health

every test done locally with no diagnosis:pulmonary, infectious, E.N.T

Posted by sdastoor @sdastoor, Apr 11, 2021

My fiance' in the Cincinnati, OH area has something going on and no one here seems to have a clue. Does anyone know of a way to get test results forwarded to someone on the Mayo staff that is more skilled, more knowledgeable or just concerned enough to not pass a situation along to another doctor and let it go?

For months she has been experiencing shortness of breath and having a non-productive, barking cough. She is spiking random fevers ranging from low-grade at 99 degrees or so up into the 102-103 degree range with night-sweats. She is lethargic and just generally feels like crap. And yes, she has been tested for COVID., Repeatedly.

I have heard terms like ventricular atrophy, dyspnea on exertion and pleural effusion.

The short answer is that she can't breathe, has a cough that is both painful and painful to hear, her body generally hurts and has zero energy. This is resulting in a state of depression that doesn't do anybody any good, and certainly doesn't make her optimistic about pursuing a solution.

She has had a boat-load of tests locally with one doctor referring her to another who refers her to another, and so on...but no one seems to have a clue what in the world is going on, much lest what to do about it. And the docs seem disinterested when they can't come up with an answer and move her along to another specialist.

Does anyone know of a way to submit her plethora of test results for review / consideration rather than putting her life and job and child on-hold for a week or so, as well as the additional expense for a single mom, to come have all of these tests run again?

She's at the point of giving up. And once that happens, things tend to go downhill rather quickly. Any help / input would be appreciated. I'm not even exactly sure to which group this should be posted. And direction there would be helpful as well.

Thank you.

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Mentor
Lori, Volunteer Mentor | @loribmt | Apr 11, 2021

@sdastoor Hello and welcome to Mayo Clinic Connect. I’m so sorry your fiancé has been having all these medical worries and no answers! Frightening and stressful for both of you! It sounds like she’s been through the gamut of tests without any diagnosis.

Have you looked directly on the Mayo Clinic website? There are great patient information pages.
Here are some links which will take you to the Mayo Clinic home page. The information will help guide you with making an appointment. No referral is needed but sometimes getting records sent directly from a physician can be of assistance. There are also tips for what to have ready when making initial contact as well as what records to have, information on insurance and other pertinent items.

I’ve also provided links to conversations from other members on the Connect regarding appointments from out of state.
https://www.mayoclinic.org/appointments
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance
https://connect.mayoclinic.org/discussion/getting-your-first-appointment/
https://connect.mayoclinic.org/discussion/gaining-admission-to-mayo-clinic-from-out-of-state
Best wishes to you and your fiancé going forward. I hope she finds some answers! Lori

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sdastoor | @sdastoor | Apr 13, 2021

Thank you for the input and attempted assistance. It is appreciated.

What I was hoping for, and I don't know if this is in any way possible, is to have a doc there review this pile of test data and see if there is a different interpretation that might come of it...or perhaps a new insight or idea.

I know that nothing is free and everyone has costs; her employer has excellent benefits so insurance for a specialist's time would not be an issue. I just don't know where or how to begin getting into the system in some way to have a conversation with someone within the Mayo family.

REPLY
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Apr 15, 2021

Don’t allow her to give up!
It is depressing to be so ill with something without a diagnosis or treatment plan!
I have been there, as well as many of Connect members.
Unfortunately, it’s usually not that easy for another specialist to review test results without speaking to the patient and doing a physical examination.
At this point her best decision would be to make an appointment at Mayo. I don’t know where you live or if it is feasible. There are other large medical centers, such as Cleveland Clinic and University teaching hospitals, where they have the expertise.
There are illnesses that are difficult to diagnose, but if she goes to a top hospital the odds are in her favor that something will be found.

REPLY
2 replies
susie7 | @susie7 | Apr 15, 2021
In reply to @astaingegerdm "Don’t allow her to give up! It is depressing to be so ill with something without..." + (show)
@astaingegerdm

Don’t allow her to give up!
It is depressing to be so ill with something without a diagnosis or treatment plan!
I have been there, as well as many of Connect members.
Unfortunately, it’s usually not that easy for another specialist to review test results without speaking to the patient and doing a physical examination.
At this point her best decision would be to make an appointment at Mayo. I don’t know where you live or if it is feasible. There are other large medical centers, such as Cleveland Clinic and University teaching hospitals, where they have the expertise.
There are illnesses that are difficult to diagnose, but if she goes to a top hospital the odds are in her favor that something will be found.

Jump to this post

I live about 5 hours from Mayo in MN. I will be checking on my insurance so I can see a doctor at Mayo.

REPLY
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Apr 15, 2021

I hope it works out! It’s almost like they connect you to a computer and answers pop out! Doctors from different specialties can work together.

REPLY
sallysunshine | @sallysunshine | Apr 16, 2021

You are much better off seeing a good functional medicine doctor. They are trained to sort out a complex medical situation without numerous referrals to other specialists.

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sdastoor | @sdastoor | Apr 19, 2021
In reply to @astaingegerdm "Don’t allow her to give up! It is depressing to be so ill with something without..." + (show)
@astaingegerdm

Don’t allow her to give up!
It is depressing to be so ill with something without a diagnosis or treatment plan!
I have been there, as well as many of Connect members.
Unfortunately, it’s usually not that easy for another specialist to review test results without speaking to the patient and doing a physical examination.
At this point her best decision would be to make an appointment at Mayo. I don’t know where you live or if it is feasible. There are other large medical centers, such as Cleveland Clinic and University teaching hospitals, where they have the expertise.
There are illnesses that are difficult to diagnose, but if she goes to a top hospital the odds are in her favor that something will be found.

Jump to this post

thank you for your encouragement and support.

We are in northern KY and she is a single mom that is estranged from her family and the father is a schmuck (definitely TMI, but the situation is so frustrating). We will keep exploring options. Thanks

REPLY
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Apr 20, 2021

It seems as if you can’t get further locally. It sounds as if she has been checked for lung and heart function ?
Discuss the possibility of going to a major university medical center, such as Cleveland Clinic or Mayo Clinic. It will probably last a few days. Since you have many test results already, you can call or email one of the institutions and explain what you told us here and see if she can become a patient. They will most likely ask to see tests done so far. If you get approved, the clinic can tell you about insurances and other expenses. There usually are lodgings of different levels in the vicinity. They are very helpful, since many/ most patients come from a distance or even other parts of the world.
We are here for continued support.

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