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Can't get a diagnosis

Posted by sunnydawn @sunnydawn, Dec 30, 2021

My daughter has had sinus congestion, vomiting, swollen lymph glands, extremely painful neck and back, chills, sweats, and exhaustion since the end of April and no doctor has been able to diagnose what the problem is.
I had COVID in April which led to a sinus infection. We thought my daughter caught it also, but her test came back negative. She was given 5 different types of antibiotics including IV antibiotics for what was thought to be a sinus infection. She ended up with cellulitis in her face and sepsis. That cleared up, but the other symptoms have not left. She has seen an ENT, an Allergist, her PCP, but they all say the tests are normal so there is nothing wrong. THERE IS DEFINITELY SOMETHING WRONG!! I have seen her be so sick she cannot make it from her bed to the bathroom. Who do you suggest we ask to see? Where should we go? Any help is deeply appreciated.

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mslw | @mslw | Dec 30, 2021

"...but her test came back negative." Many tests, including that one, are unreliable.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 30, 2021

Hi @sunnydawn, welcome. I agree with @mslw. It is possible that your daughter's test result was a false negative, meaning she may have had COVID although the test came back negative. Whether she is suffering from post-COVID syndrome or something else, you clearly need answers.

Have you considered getting a second opinion from a large medical center, like Mayo Clinic where she could be seen by multiple specialists?

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1 reply
sunnydawn | @sunnydawn | Dec 30, 2021
In reply to @colleenyoung "Hi @sunnydawn, welcome. I agree with @mslw. It is possible that your daughter's test result was..." + (show)
@colleenyoung

Hi @sunnydawn, welcome. I agree with @mslw. It is possible that your daughter's test result was a false negative, meaning she may have had COVID although the test came back negative. Whether she is suffering from post-COVID syndrome or something else, you clearly need answers.

Have you considered getting a second opinion from a large medical center, like Mayo Clinic where she could be seen by multiple specialists?

Jump to this post

It is certainly possible it was a false negative. I am not sure how to go about getting a second opinion from a clinic like Mayo when we have Kaiser. Any advice?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 30, 2021
In reply to @sunnydawn "It is certainly possible it was a false negative. I am not sure how to go..." + (show)
@sunnydawn

It is certainly possible it was a false negative. I am not sure how to go about getting a second opinion from a clinic like Mayo when we have Kaiser. Any advice?

Jump to this post

To inquire about getting an appointment at Mayo Clinic and to see if your insurance is accepted, start here: http://mayocl.in/1mtmR63

You can begin the request online or call by phone.

You may also wish to learn more about Post-COVID Clinics at Mayo Clinic here: https://connect.mayoclinic.org/blog/post-covid-recovery/tab/next-steps/

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jfn | @jfn | Dec 31, 2021

Blood tests by doctors that are looking for the unusual are needed. I so understand where you are with regards to your child and a never ending battle to find the diagnosis. In the mean time liquids besides water are needed, to include pedialite, carnation instant breakfast if tolerated to get some nutrients etc... and smoothies. If she could take a multivitamin, not a cure, but helps with everything she is not processing.

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