5 CRP tests resulting as High, but no Dx!

Posted by pkh3381 @pkh3381, Sep 5, 2023

I have had (5) CRP tests come back High, ranging from 5.9 to 8.5, with no Dx yet! The last test ordered by Mayo neurologist. I pointed out to him the result of 5.9 - High, along with the other tests ranging from 5.9 [twice] to 8.5 [three of the High test not indicating as so!] and he told me to speak with the Mayo rheumatologist I had seen. Contaced the rheumatologist thru the portal and he said to discuss the results with the Dr who ordered the test! LOL! I have had many Drs, including a dentist regarding delayed healing and my retinal specialist, indicate "inflammation" as part of my problems, but no one seems to want to get to the bottom of it. Frustrated and worried! I will sign this as "P".

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@pkh3381

No additional tests since the positive ANA tests! And, I have expressed my frustration and anxiety about not knowing what is going on.......to no avail. I did have a positive for Lupus, but was only told that false positives are common and it was dropped.
P

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Did they repeat the lupus test ? I am sorry you are going through this. I have had 2 bouts of uveitis this year. With the second diagnosis my eye doctor referred me to a rheumatologist as it can have an autoimmune cause. Except for the elevated CRP all my tests were negative. Since I have psoriasis the rheumatologist said she thinks there could still be an autoimmune component. Who knows ??

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@pkh3381

EXACTLY! This is exactly what has happened to me! And, other Drs keep telling me that I am having serious problems with inflammation that are posing problems with healing in my body, etc. , but I am exhausted trying to be my advocate. I just don't know what to do anymore.
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I had a neurologist at UPenn years ago, and when labs were done my CRP was 4x what norm was supposed to be, so I asked him what that meant.
His reply to me was “you don’t appear to be that ill”

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To "walk4life" and "harley22",
I GET IT, believe me, I DO!!
"Who knows??" is right!
I really do understand how very frustrating the Drs responses, or lack of responses, can be. I told a friend that I am exhausted with being my own advocate because I am not being HEARD!
P

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@pkh3381

Thanks for the info. This has been going on for over a year and every test has been high, plus three ANA tests positive, but no one seems to want to take the responsibility to check out. I just get passed around from Dr to Dr! Oh, well! LOL!
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With high CRP and positive ANA, I would push you PC harder to investigate. It might be something that could be helped by timely diagnosis. I've been there before and I'm going through it again I have high CRP and other blood abnormalities and have nearly died twice in the last month. I'm pushing hard to find out why my iron is so low that I need infusions. Don't give up.. you are your best expert and advocate for your own health.

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Thank you and I am so sorry for all that you are going through, and have gone through. Can I ask for your first name or initial to add you to my prayers?
P

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@harley22

I had a neurologist at UPenn years ago, and when labs were done my CRP was 4x what norm was supposed to be, so I asked him what that meant.
His reply to me was “you don’t appear to be that ill”

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It is so frustrating when you know something is wrong and the doctors are no help. I wonder why they spent all that time in medical school! My health issues may be minor, but i know there is something wrong with my body. I am going to ask for a cortisol test when i see the rheumatoid in two weeks.

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@walk4life

It is so frustrating when you know something is wrong and the doctors are no help. I wonder why they spent all that time in medical school! My health issues may be minor, but i know there is something wrong with my body. I am going to ask for a cortisol test when i see the rheumatoid in two weeks.

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I know it’s very frustrating.
Been thru so much testing and prodding over the years with no help from any of 6 neurologists I went to.
All I was told is that I’m very unique and sorry we can’t help you!
Going to start a new infusion this month called Retuximab, for many things including CIDP.
It’s a monoclonal antibody.
IVIG infusions did not work for me in the past.

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@pkh3381

The worst thing right now is the diarrhea, which is constant, literally. And, I have incontinence, both urine and bowel, so that tells you the "messes" i get into! LOL! My former GI, told me I must "learn to manage my expectations" about the diarrhea, whatever the "H" that means! My stomach bothers me most all the time. The Mayo GI I went to, because of other problems I had, put the diarrhea to the bottom of the list, in spite of me being graphic about the problems I am having, to get their attention. And, even with all the diarrhea [and vomiting] I have, I am gaining weight instead of losing it, sometimes 4-5 lbs a day! It is just craziness! Yes, I may have to think about a major medical center or university hospital, if I can get myself to the point to where I can leaving the house! 😉
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I thought Mayo IS supposed to be a major medical center? Isn't that why we are here? Its crazy in my book to feel you've gotten rotten care on their own forum without them contacting you even from this post. Just to protect their own reputation. I wish big medical orgs cared more. Sometimes is you find a small practice nearby, well, a big fish in a small pond? I need to look up CRP. My body is so inflamed. Constant pain and IBS too. Manage your expectations? Like stop asking me to care? Annoying and esp disheartening to have this be Mayo itself as many across the country see them as a big medical system. Like Duke and Mayo should kind if be equal? Disheartening. I need to write a book about bad care too. Keep talking.

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@bebold

I thought Mayo IS supposed to be a major medical center? Isn't that why we are here? Its crazy in my book to feel you've gotten rotten care on their own forum without them contacting you even from this post. Just to protect their own reputation. I wish big medical orgs cared more. Sometimes is you find a small practice nearby, well, a big fish in a small pond? I need to look up CRP. My body is so inflamed. Constant pain and IBS too. Manage your expectations? Like stop asking me to care? Annoying and esp disheartening to have this be Mayo itself as many across the country see them as a big medical system. Like Duke and Mayo should kind if be equal? Disheartening. I need to write a book about bad care too. Keep talking.

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I totally agree, I’m hoping someday I’ll stumble upon my Dr. House, and he’ll figure out what’s wrong with me before I die.

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@pkh3381

The worst thing right now is the diarrhea, which is constant, literally. And, I have incontinence, both urine and bowel, so that tells you the "messes" i get into! LOL! My former GI, told me I must "learn to manage my expectations" about the diarrhea, whatever the "H" that means! My stomach bothers me most all the time. The Mayo GI I went to, because of other problems I had, put the diarrhea to the bottom of the list, in spite of me being graphic about the problems I am having, to get their attention. And, even with all the diarrhea [and vomiting] I have, I am gaining weight instead of losing it, sometimes 4-5 lbs a day! It is just craziness! Yes, I may have to think about a major medical center or university hospital, if I can get myself to the point to where I can leaving the house! 😉
P

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@pkh3381, clearly the diarrhea is negatively affecting your quality of life. It sounds like you've taken all the right steps to make this clear during your consultations and need this serious symptom to be addressed.

You may wish to speak with some at Mayo's Office of Patient Experience. You can call them at 844-544-0036
If you prefer written communication, you can use the online form provided on the webpage here: https://www.mayoclinic.org/about-mayo-clinic/patient-experience
A specialist at the Office of Patient Experience can facilitate communication between you and your GI specialist to help find a solution.

As @bebold rightly said, Mayo Clinic is a major medical center. I'm glad that you are already a patient at Mayo Clinic and can benefit from their team approach.

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