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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 | @pkh3381 | Sep 9, 2023
In reply to @colleenyoung "@pkh3381, clearly the diarrhea is negatively affecting your quality of life. It sounds like you've taken..." + (show)
@colleenyoung

@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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Thank you so much for responding to me. I really appreciate that. I have told many Mayo employees that I think there is a stipulation that each employee must display before they are hired........that is KINDNESS, and I truly mean it. Thank you for your kindness. I just wish the Drs, too, would be required to meet that stipulation. I am on a "break" right now because I got so frustrated with my Drs [neurologist, rheumatologist and GI], but I may do a follow up when I feel I have built up my strength. I really do appreciate you and the info you provided me.
P

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pkh3381 | @pkh3381 | Sep 9, 2023

SIX neurologists! You poor thing! I thought I had many with 4, one of which I no longer see at all. Actually, I am seeing none of them right now because I am so disgusted with how they treated me. The main Mayo neuro even quoted me an incorrect Dx thru the portal. One I KNOW I do not have, one not even related to my symptoms, and one he NEVER EVEN MENTIONED TO ME BEFORE! If he had done so, I would have argued with him because I have had this Dx before, I know the symptoms, and it is nothing like the symptoms I have related to him. I would know it if I had the Dx he just recently quoted. Sometimes I think they believe we are dummies that they can say anything to us and we will just swallow it. First of all, you gain a lot of knowledge just with your medical experiences. You gain a lot of knowledge researching the symptoms that the Drs don't pay attention to. And, my career was in the medicaal field for years! Not that I know more than the Drs, or that I am a "know-it-all", but there are things they just cannot get by me! 😉 Hang in there! You have my sympathy.
P

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pkh3381 | @pkh3381 | Sep 9, 2023
In reply to @bebold "I thought Mayo IS supposed to be a major medical center? Isn't that why we are..." + (show)
@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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The GI who told me to "learn to manage my expectations" is not a Mayo Dr. I wanted to make that clear. He is just an idiot Dr I went to before Mayo. Believe me, I have gotten many laughs and puzzled reactions when I relay that story! LOL! You just have to keep laughing! Otherwise, it will really get you down. Thanks for your response and it sounds like you have your share of "you know what" to manage. I am sorry for your experiences. We deserve better.
P

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jabrown0407 | @jabrown0407 | Sep 10, 2023
In reply to @walk4life "It is so frustrating when you know something is wrong and the doctors are no help...." + (show)
@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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@walk4life Please read up on the cortisol test, I understand that the blood draw needs to be done early in the morning. My endocrinologist looked at the time of day on the blood draw for me I literally just made it under the wire. My PCP had ordered it and apparently did not know time of draw was critical and neither did the lab doing the draw. I live in the Dallas area and these are doctors and labs of major health providers, so not a small town by any means. Thankfully my endocrinologist knew to check.
Also, have you had your Sed Rate tested? https://www.mayoclinic.org/tests-procedures/sed-rate/about/pac-20384797
Sed Rate and CRP are the two inflammatory tests. They are both non-specific and do not directly lead to a Dx they simply tell doctors about inflammation in your body. Your rheumy should be able to identify/eliminate an autoimmune problem.

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1 reply
pkh3381 | @pkh3381 | Sep 10, 2023

I will look into the cortisol test. What exactly is the test looking for? No Dr has ever mentioned cortisol to me, so I am not educated on it. Yes, I have had the sed rate tests and some have been high, some not. Actually, the sed rate tests were not done looking for imflammation. I have these stabbing pains in the R temple area, leaving me with swelling, like a bulging vein, or something and extremely tender for awhile. They were looking for temporal arteritis, or giant cell arteritis, and like everything else, it was just dropped. I still have the temporal pains.

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walk4life | @walk4life | Sep 10, 2023
In reply to @jabrown0407 "@walk4life Please read up on the cortisol test, I understand that the blood draw needs to..." + (show)
@jabrown0407

@walk4life Please read up on the cortisol test, I understand that the blood draw needs to be done early in the morning. My endocrinologist looked at the time of day on the blood draw for me I literally just made it under the wire. My PCP had ordered it and apparently did not know time of draw was critical and neither did the lab doing the draw. I live in the Dallas area and these are doctors and labs of major health providers, so not a small town by any means. Thankfully my endocrinologist knew to check.
Also, have you had your Sed Rate tested? https://www.mayoclinic.org/tests-procedures/sed-rate/about/pac-20384797
Sed Rate and CRP are the two inflammatory tests. They are both non-specific and do not directly lead to a Dx they simply tell doctors about inflammation in your body. Your rheumy should be able to identify/eliminate an autoimmune problem.

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Thanks for the info about the cortisol test. Yes my sed rate was elevated. CRP elevated -all the ither tests were normal .

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1 reply
jabrown0407 | @jabrown0407 | Sep 10, 2023
In reply to @walk4life "Thanks for the info about the cortisol test. Yes my sed rate was elevated. CRP elevated..." + (show)
@walk4life

Thanks for the info about the cortisol test. Yes my sed rate was elevated. CRP elevated -all the ither tests were normal .

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I am not a doctor- but several years ago I was diagnosed with PMR, polymyalgia rheumatica. It is a default Dx based on them not being able to find another cause for your inflammation markers being high plus other symptoms. https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/symptoms-causes/syc-20376539
Mayo Connect has a group focused on PMR. If you do get a Dx of PMR you might want to join the group.

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harley22 | @harley22 | Sep 10, 2023
In reply to @harley22 "I had a neurologist at UPenn years ago, and when labs were done my CRP was..." + (show)
@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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And I forgot to mention not only was my CRProtein high, but so was my protein in my spinal fluid.
Got no answers for that one either

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