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  • Help! Any suggestions?

    I'm having trouble finding a diagnosis, which is beginning to get pretty frustrating.

    So I was wondering if anyone here had any suggestions on where to go looking.

    A quick run down: (26, Female, Australia)

    High white blood cell count for at least the last 6 months (last two months counts were: 15, 16, 20, 16), no obvious point of infection, inflammation in joints (knee, ankles, hips, occasionally shoulders), inflammation and horrible pain in lower right abdomen/ groin for 2.5 months daily, terrible fatigue, daily vomiting sessions, liver function is a little high (not alarmingly up but higher than average). CT scans are clean, X-rays are clean, ultrasound showed a left side ovarian cyst but not abnormal, gallium scan confirmed Crohn's disease but then the people who did the scan contacted my dr a week later saying that it's not Crohn's. So back to square one. 6 X-rays and 2 ultrasounds are booked in for next week.

    Had new bloods taken this week, will get results tomorrow.

    Some history:

    Dr sent me to ER a month ago. ER dr kept saying cyst and then put me into Gynae, the gynaecologist was adamant it's not the cyst. But ER dr kept saying "well, it's not her appendix must be the cyst" another ER dr agreed that it wasn't my cyst or appendix, but then surgeon made final decision without consultation that it's my cyst, they actually sent me home with a list of reasons I should come back, all of which was why my doctor sent me in there to begin with. When I pointed that out, they shrugged me off and discharged with nothing more than a clean chest X-ray (for lower right abdo pain?)

    6 months ago I presented to dr with bad fatigue, blood test confirmed high wbc but after 2 months of trying to figure it out he found my sinus inflamed (no sinus symptoms, just inflammation), he made the decision it was a sinus infection, course of antibiotics made it worse.

    5 years ago: presented to dr's with horrible joint pain, fatigue, general unwellness. Couldn't walk due to ankle inflammation, this lasted 3 months, blood test confirmed high WBC, was loosely monitored but not treated.

    4 years ago: rash on hands, little pus bubbles, sore, itchy, peeling skin. Has lasted 4 years and not once cleared up.

    Also worth mentioning, low rbc, I dance on the boarder of anemia without actually dropping below the line. Have since childhood.

    Anyone have any suggestions I could explore?

  • My medical knowledge is limited, I'm afraid. But it does sound like you know your symptoms very well. I don't really know what advice to offer, but hopefully someone else on here will be able to help you. Still, your doctors should know what is wrong with you. Have they prescribed a cream for your hands? That sounds very sore. I find it sad they would dismiss the seriousness of your illness so easily. It is obvious it is serious. You could always see a different doctor and just keep pushing to get a diagnosis.

    Comment


    • Have you had an internist workup? A rheumatologist? Hematologist? Dermatologist for those hands? What is your diet like? Are you allergic to anything?gluten? Dairy?<br />
      <br />
      I don't know how your med system works in Australia, but you need some more specialized and detailed work up. What have they tested you for thru bloodwork? <br />
      It sounds like it could be an autoimmune disorder. With all the inflammation throughout your body, it could be so many things. <br />
      <br />
      With so many systems having abnormalities, you really need more than xrays and ultrasound. What specifically have they tested for? Beyond the baseline blood counts and organic chemistry?<br />
      What specialists have you consulted?<br />
      <br />
      What have you found through your own research? <br />
      Are you able to work, and function in your day to day life?<br />
      <br />
      Sorry you're suffering with this.

      Comment


      • I've done a few different steroid creams for my hand, while they reduce it a bit, they don't clear it up and then flare harder after the course is finished. It hasn't really bothered me too badly, it hurts and itches (and looks horrible!) but I've gotten used to it, its severe enough to mention along with the rest of symptoms, you never know what might or might not be related.
        My regular doctor has been amazing, he is going above and beyond for me, I know he won't stop searching until he has an answer... However, he is definitely in over his head with whatever is happening with me. Hence my internet search for answers, I feel like maybe I'll find a potential lead to mention to him that we can explore together. I'll also be seeing my old dr soon for a second opinion, see if he has any ideas. I was extremely disappointed with the hospital staff though. But such is life. Thank you for taking the time to respond. Hope you are well! ❤️

        Comment


        • Originally posted by atskitty2 View Post
          Have you had an internist workup? A rheumatologist? Hematologist? Dermatologist for those hands? What is your diet like? Are you allergic to anything?gluten? Dairy?<br />
          <br />
          I don't know how your med system works in Australia, but you need some more specialized and detailed work up. What have they tested you for thru bloodwork? <br />
          It sounds like it could be an autoimmune disorder. With all the inflammation throughout your body, it could be so many things. <br />
          <br />
          With so many systems having abnormalities, you really need more than xrays and ultrasound. What specifically have they tested for? Beyond the baseline blood counts and organic chemistry?<br />
          What specialists have you consulted?<br />
          <br />
          What have you found through your own research? <br />
          Are you able to work, and function in your day to day life?<br />
          <br />
          Sorry you're suffering with this.
          I'm yet to be referred to any specialists as my doctor hasn't found anything concrete to back up a referral. I was booked in with a gastroenterologist which was coming up in 2 weeks for Crohn's but with that now off the table, there is nothing substantial to warrant an appointment.
          This is where my frustration stems from, my GP (who is bending over backwards to help me) is simply in way over his head, but without any substantial direction to follow, there isn't enough to back up a specialist appointment.
          As for an internist work up, I don't believe i have had one, I may bring this up tomorrow when I see my GP.
          My GP has tested me for a range of things from celiac disease to testing for cancer markers. I've lost count, and can't remember off the top of my head. My most recent is for arthritis. (I get Results tomorrow.)
          I'm lactose entolerant and allergic only to a few medications (Steroid nasal spray, penicillin and implanon).
          I've been doing some research but to be honest I don't even know where to start or what I'm doing. Every search including high white blood cell counts leads me to leukaemia sites (ruled out early on) and any search without it leads me to lupus (but that's usually characterised by low wbc counts). Potiently it could be rheumatoid arthritis but I don't feel like that explains a majority of my symptoms.
          As for my daily life, I'm a full time student, my grades have dropped significantly in the last 6 months because I simply can't focus enough through the fatigue on my studies no matter how hard I try. I went from top marks in all my subjects to barely scraping passes. When I physically push myself too far (things that weren't previously an issue), I pay for it for days.

          Comment


          • That is EXACTLY WHY your gp needs to refer you out to all specialists in the organ systems in which you have symptoms. He may be bending over backward for you, but how difficult is it to make a referral there? It's quite easy here in the States, and **expected** of general practitioners. If he has no answers, it is his responsibility and duty to get you to a doctor who may be able to help.<br />
            <br />
            You need to be seeing doctors with more specialized knowledge. Try a nutritionist if you're lactose intolerant. You may have many more nutritional deficiencies causing malabsorption...or hypersensitivity responses by your immune system producing inflammatory response throughout your body. You may not have Celiac but you could have a wheat sensitivity that you need to address. <br />
            <br />
            Liver abnormality alone is reason for an internist referral. At least here...i have no idea why an organ issue was not referred out by your GP or ER doc.<br />
            Makes no sense to me.<br />
            <br />
            Lupus came to mind for you, as you were telling your story. Autoimmune disorders present in many crazy patterns and they are difficult to diagnose. Your age of onset would fit. <br />
            <br />
            Have you contacted the university hospitals in your province? Reach out to them yourself, since your doc seems to be unable due to "politics" or unwilling.<br />
            <br />
            Keep fighting. Keep stress to a minimum as that's obviously a trigger. Do your research. I'd start with your diet, as that's easiest and most controllable item on the table right now. <br />
            <br />
            And light a fire under the **** of that doc my dear...

            Comment


            • Originally posted by atskitty2 View Post
              That is EXACTLY WHY your gp needs to refer you out to all specialists in the organ systems in which you have symptoms. He may be bending over backward for you, but how difficult is it to make a referral there? It's quite easy here in the States, and ****expecte******** of general practitioners. If he has no answers, it is his responsibility and duty to get you to a doctor who may be able to help.<br />
              <br />
              You need to be seeing doctors with more specialized knowledge. Try a nutritionist if you're lactose intolerant. You may have many more nutritional deficiencies causing malabsorption...or hypersensitivity responses by your immune system producing inflammatory response throughout your body. You may not have Celiac but you could have a wheat sensitivity that you need to address. <br />
              <br />
              Liver abnormality alone is reason for an internist referral. At least here...i have no idea why an organ issue was not referred out by your GP or ER doc.<br />
              Makes no sense to me.<br />
              <br />
              Lupus came to mind for you, as you were telling your story. Autoimmune disorders present in many crazy patterns and they are difficult to diagnose. Your age of onset would fit. <br />
              <br />
              Have you contacted the university hospitals in your province? Reach out to them yourself, since your doc seems to be unable due to &quot;politics&quot; or unwilling.<br />
              <br />
              Keep fighting. Keep stress to a minimum as that's obviously a trigger. Do your research. I'd start with your diet, as that's easiest and most controllable item on the table right now. <br />
              <br />
              And light a fire under the ******** of that doc my dear...
              It's not that easy here, in order for a referral he needs solid grounds to refer me, otherwise it's not cover by health insurance or the public system and will cost a pretty penny. As much as I wish that wasn't an issue, unfortunately at this point it is.
              I've been playing with my diet, if something makes me feel worse I cut it out of my diet.
              My doctor is definitely willing to do so, but it's not an option for him until he can show more than observational evidence. Stress unfortunately is all around right now, between medical and in the recess of moving house! But hopefully the house will be settled in a few days.
              I meet with my dr in a few hours and will speak with him again about finding someone to see me. I'll also be going for a second opinion this week. We don't have university hospitals that I'm aware of, but will look into it. I must say, I have no idea what I'm doing or where to start, which is why I'm trying my luck here. Any new knowledge is good knowledge.

              Comment


              • Any update from your doc visit?<br />
                <br />
                The hand rash sounds a lot like eczema except the pus.

                Comment


                • If you need a diagnosis, I thoroughly recommend watching Dr. Robert Morse on YouTube. He lets people write in and explains what they have, why they have it and how to fix it naturally. He has had incredible results at his clinic and decided to start making videos to help more people. Love him!

                  Comment

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