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  • Am I a medical mystery?

    I was admitted to the hospital 13 days ago with a diagnosis of sepsis I have had CAT scans and Mri's and multiple ultrasounds of everything and they cannot find the source, so they have have me on IV antibiotics and then testing the blood which the 5-day grows have been 0 for 10 days and when I came in the markers were 25 and they have went down to 13. they are now going to send me home on antibiotics for 2 weeks and follow up after that. I just cannot believe that all the tests that I've had they cannot find anything. I mean they have looked at my heart from the outside Ultra sounded from inside my esophagus set my white blood cells to go out and be radio activated and then put back in so they can take pictures to see if the white blood cells went to the point of infection but they cannot find anything I'm so confused sweating like crazy with cold chills I have no UTI and no sores at all that's what's so confusing it seems like autonomic dysreflexia but don't know from what. really strange is that my urine output has decreased today and I'm just wondering is that is from all the sweating anybody been through anything similar I sure would like to hear thanks
    "Yesterday's History,Tomorrow's a Mystery"

  • #2
    Did they do a lumbar puncture? Do you headache or stiff neck?

    Edited to add: Sad to say, but I've had plenty of ER visits and admissions that didn't yield any useful diagnoses. I think many of us here have had that same kind of frustration - mega thousands of dollars paid out, but no answers. I hope eventually you'll get some!
    MS with cervical and thoracic cord lesions

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    • #3
      I do not have a headache or stiff neck, they did not do a puncture just a mri
      "Yesterday's History,Tomorrow's a Mystery"

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      • #4
        It's a very good sign that you don't have headache or stiff neck...they probably didn't have any reason to suspect meningitis, then. I wish I had some useful ideas or suggestions, maybe SCI Nurse will see this thread. I truly understand how scary it is to be sent home with no answers.
        MS with cervical and thoracic cord lesions

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        • #5
          What is your CRP level? Sed rate? Could you have osteomyelitis someplace? Prostatitis?

          (KLD)
          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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          • #6
            Originally posted by SCI-Nurse View Post
            What is your CRP level? Sed rate? Could you have osteomyelitis someplace? Prostatitis?

            (KLD)

            CRP level was 25 when I went to the hospital and now it is at 11, prostate was checked out and is fine, I don't know if I could have osteomyelitis or why I would. I have attached a screen shot maybe you could tell me which test that I can get the sed rate from?
            Attached Files
            Last edited by Hawk; 10-02-2019, 02:38 PM.
            "Yesterday's History,Tomorrow's a Mystery"

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            • #7
              The CBC should give you the sed rate.

              Osteo, prostatitis, uti, are the most common causes of sepsis, especially when you have had a spinal cord injury. Any respiratory problems? I am assuming no pressure ulcers. Unfortunately, you may not get an answer. I know how frustrating that can be -been there.

              ckf
              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

              Comment


              • #8
                Sepsis seems like a "garbage can" diagnosis where when they choose one out what it is, that's what they call it. When I had three hospitalizations for cellulitis within six months without any obvious reason, the last time they did a nuclear bone scan. They take out a full 60 mL syringe of blood, separate out the white cells, take them to the nuclear medicine lab and label them with a radioisotope of some sort, put the white cells back in you, give it some time and then do a bone scan to see what lights up. The white cells go to any area of infection which may not be observable in other forms of imaging or lab work. For me, they thought a multiple decades-old ankle surgery with internal wire fixation might have been the source of some type of bone infection.

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                • #9
                  Additional information

                  Originally posted by SCI-Nurse View Post
                  The CBC should give you the sed rate.

                  Osteo, prostatitis, uti, are the most common causes of sepsis, especially when you have had a spinal cord injury. Any respiratory problems? I am assuming no pressure ulcers. Unfortunately, you may not get an answer. I know how frustrating that can be -been there.

                  ckf
                  My symptoms were very bad indigestion, trying to vomit but could only bring a acid reflux. Freezing cold with 103 temperature. They did the usual blood work and urine, echo of the heart found nothing, several cat scans, full MRI of the spinal cord, they took a lot of blood and separated the white blood cells and attached nuclear markers and then injected me stating that the white blood cells should go directly to the source but they did not find anything, they went down my throat with an ultrasound of my heart. I did not have any ulcers when I was admitted but shortly developed a spot on my coccyx. No respiratory issues thank god! I was in the hospital for 14 days and sent home to receive (ansef) antibiotics every 6 hours IV push. Im on medication, Pepcid and Carafate for the acid reflux however that don't seem to be helping hand I am also sweating profusely whether or not I am in bed or sitting in my chair. I really don't understand what is going on? What happens when I go back for a visit on Tuesday and am not feeling any different 4 weeks later? I have not really had any temperatures above 100 for over three weeks.
                  Attached Files
                  Last edited by Hawk; 10-03-2019, 11:31 AM.
                  "Yesterday's History,Tomorrow's a Mystery"

                  Comment


                  • #10
                    Originally posted by SCI-Nurse View Post
                    What is your CRP level? Sed rate? Could you have osteomyelitis someplace? Prostatitis?

                    (KLD)
                    9/15 - CRP - 25.39 - RBC 3.52 uL

                    9/25 - CRP 13.37 mg/dL - RBC 3.33 uL
                    9/27 - CRP 14.57 mg/dL - RBC 3.56 uL
                    9/29 - CRP 13.09 mg/dL - RBC 3.67 uL
                    9/30 - CRP 11.70 mg/dL - RBC 3.56 uL
                    10/7 - CRP 9.3 mg/dL - RBC 2.63 uL

                    Hemoglobin from 11.8 to 10.1
                    Hematocrit, 36.3 to 32

                    Albumin, and Creatinine low.
                    so my CRP has gone from 25 to 9
                    "Yesterday's History,Tomorrow's a Mystery"

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                    • #11
                      Hey Hawk, I just noticed your post and I was Recently hospitalized with sepsis but they only kept me in the hospital for 5 days. I also didn't have a UTI , however it sounds like my Hospital didn't do half of the things that your hospital did. They didn't do a full MRI, never checked my prostate, And I look at your tests and none of those were done on me, Especially the CBC or CRP that you guys keep talking about. they were only concerned with my blood cultures and after 5 days of no growth they released me. it seemed all they were concerned about was with my high lactic acid levels and white blood cell count which were high. Well less than two weeks after I was released from the hospital I did a urinalysis and now I have a UTI with e.coli. Seems like infections never end with us.

                      I feel the same way you do Hawk, I feel like I walked out of the hospital not knowing how I got sepsis and how I'm going to prevent this in the future. I posted an earlier question about how I can get sepsis without a UTI and KLD asked if I was seen by an infectious disease doctor When I was hospitalized which I wasn't. Now I really regret not knowing all this because I wish they would have checked my prostate and esophagus.

                      Just out of curiosity what are your next steps and trying to find out how you got sepsis?

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                      • #12
                        Originally posted by SCI-Nurse View Post
                        What is your CRP level? Sed rate? Could you have osteomyelitis someplace? Prostatitis?

                        (KLD)
                        When I was hospitalized none of these tests they did on HAWK we're done on me, should I request to have the CRP levels checked?

                        Comment


                        • #13
                          Originally posted by pukkap View Post
                          Hey Hawk, I just noticed your post and I was Recently hospitalized with sepsis but they only kept me in the hospital for 5 days. I also didn't have a UTI , however it sounds like my Hospital didn't do half of the things that your hospital did. They didn't do a full MRI, never checked my prostate, And I look at your tests and none of those were done on me, Especially the CBC or CRP that you guys keep talking about. they were only concerned with my blood cultures and after 5 days of no growth they released me. it seemed all they were concerned about was with my high lactic acid levels and white blood cell count which were high. Well less than two weeks after I was released from the hospital I did a urinalysis and now I have a UTI with e.coli. Seems like infections never end with us.

                          I feel the same way you do Hawk, I feel like I walked out of the hospital not knowing how I got sepsis and how I'm going to prevent this in the future. I posted an earlier question about how I can get sepsis without a UTI and KLD asked if I was seen by an infectious disease doctor When I was hospitalized which I wasn't. Now I really regret not knowing all this because I wish they would have checked my prostate and esophagus.

                          Just out of curiosity what are your next steps and trying to find out how you got sepsis?

                          I was seen by an infectious disease doctor she is the one that ordered all those tests. so far I have had two blood tests since I have been out of the hospital sent home on two weeks IV antibiotics after the ones in the hospital my numbers are going up but still no idea where the infection came from or where it went. she was worried about my hemoglobin count and said if it dropped any lower I would have to have a blood transfusion however it did not. I just had another culture done today and did not realize how much blood they took to perform that, as it was 4:30 in the morning when it was done in the hospital and I never paid much attention. I'll let you know what my infections disease doctor says next Friday when I see her on what the plan is
                          "Yesterday's History,Tomorrow's a Mystery"

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                          • #14
                            https://www.medicalnewstoday.com/articles/322138.php
                            this is a Medical News today article on an elevated CRP Level
                            c reactive protein

                            keep us posted on the outcome

                            pbr
                            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                            Comment


                            • #15
                              Originally posted by Hawk View Post
                              I was seen by an infectious disease doctor she is the one that ordered all those tests. so far I have had two blood tests since I have been out of the hospital sent home on two weeks IV antibiotics after the ones in the hospital my numbers are going up but still no idea where the infection came from or where it went. she was worried about my hemoglobin count and said if it dropped any lower I would have to have a blood transfusion however it did not. I just had another culture done today and did not realize how much blood they took to perform that, as it was 4:30 in the morning when it was done in the hospital and I never paid much attention. I'll let you know what my infections disease doctor says next Friday when I see her on what the plan is
                              thanks Hawk, I finally received the referral for an infectious disease doctor myself, I'll keep you posted as well. Thanks for sharing all your info.

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