Trouble diagnosing, maybe a blood disorder?

Posted , 5 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hi, I'm an 18 year old female and for 2 years I have been having health problems. It started out with a skin rash (looks like normal flat skin, just red), and slowly it started spreading all over my body. Over these two years I also developed other symptoms: unexplained and sudden weight loss (7kg), hair loss, breathlessness episodes (sometimes after coughing or sneezing), cough, enlarged lymph nodes in the neck and groin, fatigue, low fever, frequent chills. In the blood tests throughout these two years the eosinophils level is always elevated. Tests ruled out parasites. I have been to many doctors and have ruled out autoimmune diseases, rheumatic diseases, heart disorders, endocrine disorders, infectious diseases. So now I do not know what to do and I am waiting for an appointment with my doctor who spoke about the possibility of this being a haematological disorder. I just wanted to know any of you had these symptoms too and turned out to have a blood disorder? 

Thank you

1 like, 25 replies

Report

25 Replies

Next
  • Posted

    Wow I have same symptoms!!
    Report
    • Posted

      Are you struggling with doctors too? Unfortunately no one knows what is wrong with me and it has been a bit of a struggle to get my family doctor to refer me to other doctors, such as rheumatologists sad
      Report
    • Posted

      Yes indeed!! My doctor doesn't know what to think so after seeing the hematologist who said that my blood work was ok ( high white b count) and he had no clue about the rash, high hemocrit and high red blood cell , basically he told me it is probably anxiety...lol

      I don't trust any doctor opinion at this time as I saw multiple (minus immunologist)

      Is your hair loss bad? I have lost a bunch and still am, I also have a rash ( my doctor prescribed anti acne medicine) but I still have it, also my vein on hands are very visible as I lost weight but I retain water at the same time. Is your rash red dots? Mine is.

      Report
    • Posted

      I heard a lot of ridiculous things too, such as "you're probably just stressed" or "you're just growing up". My hair loss ir significant, as even now I remember how my hair looked like 2 years ago and now - in my opinion the hair loss is a bit bad. My rash looks like normal skin - but it is just red. It's not itchy, it's not dry, it just looks like normal skin, but red. It started off small, but now it covers a large area overall. However, I do wake up at night and it is itchy because I have night sweats. Not severe, but I do wake up because of it. It's just really strange because I sweat, but I am cold and have chills most of the time.

      Report
  • Posted

    Ask your doctor about  a bone marrow test. I had some of those same symtoms and was diagnoised with leukemia. Hope it's not, but good to catch it early if that's the case. Blood diseases are treatable now days. Let me know how it goes?  Good luck!!

    Report
    • Posted

      Oh no, did you find the leukaemia early? I hope you're better now. Thanks for your reply, I will ask my doctor about the bone marrow test or just a referral to a hematologist. 

      Report
    • Posted

      It was over ten years before they found out. All the doctors I went to were puzzled by my symptoms and blood work, until one doctor had me see a hematologist. Lucky for me, mine is a slow growing type call CLL (Chronic Lymphocytic Leukemia). Yes, there are many types of blood disorders. I am not being treated yet, but that might change because I recently developed an itchy rash all over my body, coughing like crazy, and strange enlightenment in groined area. I forgot to ask, did  your doctor order a complete blood test for you? 

       

      Report
    • Posted

      Wow, 10 years is a very long time. And yes, I am meant to have yet another blood test - on thursday. For the past two years my results have been very strange, last year I had an abnormal white blood cell count, and this year apparently it is normal again. But throughout these two years I have constantly had a high eosinophil count as well as platelet count, which is also strange because I do get bruises out of nowhere sometimes. Doctors are puzzled by my symptoms too, I have been to an immunologist, infectious disease doctor, rheumatologist, endocrinologist, dermatologist... I guess all that is left now is a hematologist as my GP has mentioned a while ago that if all my other tests from these doctors come back normal - i might need to go see a hematologist. Also, what results did you have for your bloodwork?
      Report
    • Posted

      Interested in knowing what your blood work led to believe in CLL as I mentioned it to heamatologist and basically he laughed at me saying my white blood count would be higher than my 12.000 borderline high count. Thank you!

      Lidia

      Report
    • Posted

      Maybe it's best to get a second opinion or to even go privately, as I realised that doctors "care" more when you go privately... I wanted to ask you aswell do you cough all the time or do you have episodes? Sometimes my cough is dry at first but then it is with phlegm and it causes me to have trouble breathing after a while

      Report
    • Posted

      I should say to you; Don't worry too much, because if you do have some type blood disorder, its not the end of the world like it use to be. Now days there are lots of treatment options. Also, you can't make too much out of your WBC count being high (just could be your body fighting off something like an infection) I was told I would probably die from something else other then my CLL.  Right now my WBC is 19.6 H,.....RBC 4.08 L.....HGB 12.1 L......HCT 37.0 L.....Lymph% 76.2 H..... Lymph # 15.0 H....My Hematologist is not treating it because it's best just to "wait and watch". No need to get aggressive yet. My concern for you is to find out what's going on. It just could be some kind of allergy or something.

      Report
    • Posted

      I think your hematogist is correct. I was only diagnose after taking a bone marrow test.  Actually, my blood work was not too far off the scale for Leukemia. Just mile anemia. What they found for me was  a lot of immature and abnormal blood cells that stopped the normal blood cells from producing. 

       

      Report
    • Posted

      Same exact, it is so annoying, I tried anti allergic pills for a month as per order of my doc, but nothing changed. Now he said he will send me to pneumologist to rule out asthma?!? What are you taking for cough?
      Report
    • Posted

      I did take antihistamines for a while but it didnt work and didnt take away the rash or the symptoms, does this mean that allergy is ruled out?? Also, my "rash" looks like normal skin, but it's red. There's no scabs, no dry skin, no breaking skin - it literally looks like normal skin, but red... Do you have a rash aswell, if so, what does it look like?

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up