Feeling scared

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Im 38yo female with all over lymph nodes waxing and waning but 1 constantly hard and large on my shoulder i have severe fatigue and nite sweats so bad and the nodes in my elbows and knees are makeing my arms and legs feel achy and weaki have just had my first app with hematology and alot of bloods and full ct done wich didnt show to much except of course some swollen nodes and in my face bloods came back not to bad i am anemic micro something and low white cell count i was wondering if i could plz get some advice as to what i should expect next.my next app is this friday and i feel scared as my twin sister was diagnosed 1 year ago with cll please help.i also have severe itching all over and was getting chronic hives for 6mths only on my hips butt and upper thighs and severe bruising all over thighs.now in my upper arms closest to my arm pit on left side and on upper thighs i have lots of hard pebble size lumps on the inner side

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  • Posted

    I don't really have an answer for you but if it makes you feel better I'm going through something too rolleyes 

    Pains all over. The worst ones are in my thighs, inner bicep, groin, sometimes the armpits, I get migraines, and I've had some swollen lymph nodes for like a little over 2 months. I've seen so many doctors it's crazy. I've had four blood panels done and the only thing I got was possible hypothyroidism. Mine seems to come in flare ups because I'll feel fine for like 2 weeks and then bad for 2. It's strange. I'll get tingling in the extremities but that seemed to stop. My newest thing is chest pain. Which makes me worried about lymphoma or something because I got scans on my neck and chest a month ago and I didn't have much chest pain. But right now it's awful. So that makes me think I need a new scan because my month old one was clear. Doctor said I have a few swollen nodes in the neck but he didn't think it was a big deal I guess... I'm seeing an ent in three days and I'm just gonna demand a biopsy for some peace of mind or find out what's going on. It really is the worst to not know what's going on with your own body. Keep pushing to find out though. 

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  • Posted

    I'm going to comment on a couple of your symptoms. First the night sweats this is not good. You never said how often or how many of these night sweats you've been having. Also the CBC Blood test that was performed, you stated came back good? But you also said that you were anemic which means you have low red blood cell count. You mentioned micro something. I'm assuming your referring to microcytic anemia or microcytosis which means the red blood cells are smaller than normal, which most microcytic anemias prevent the body from making enough hemoglobin the component of red blood cells that carries o2 to your organs. These most likely are caused by iron deficiency. Your body needs iron to produce hemoglobin. However the hives could be caused by an Acute Stress disorder from you worrying about your symptoms. I don't wish to scare you but the night sweats, with the low blood counts (Anemia) in general could be a sign of Pre-leukemia (myelodysplastic syndrome). However this could also be caused by some sort of infection as well, or even side effects of medication. You will need to let the hematologist and other specialist perform further testing to decide what the cause of these symptoms are. You may also need to start a Iron supplement of 25ml of Iron for the anemia and 25ml of Benadryl when you break out in these hives. Provided your not allergic to Benadryl.  I hope that your diagnosis is minor and you are doing much better, please give me an update on your current status. Please don't worry yourself and let the doctors do the worrying for you.  Best Of Luck.

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    • Posted

      Hi jonny thank u for the reply i have the iron under control but i have nite sweats so severe every other nite now but heamatoligist has run so many tests and nothing came out of it only that my natural killer cells are very low but now my left lower leg and ankle are constantly aching with bone pain but the doc thinks im a mystery so im feeling very stuck and kinda being made to feel like a hypocondriac but all the same symptoms are persisting its 9mths long now and the fatigue is unbearable somr days i dont no where to turn.

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    • Posted

      What about medication? Are you taking any new meds or started meds around the time of your new symptoms started? How about infectious diseases have you been checked for diseases such as hiv, mononucleosis, or tb? Also last but not least your heart have you been checked for heart disease. There are lots of things that could be causing night sweating and aches. Think about when these symptoms first started and think about what all test have been done, is there anything that stands out to you? Please let me know.
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    • Posted

      Hi again and no new meds nothing different in life style or anything i have been checked for all that stuff literally everything not heart though i did have a broken ankle round the time the hives started
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    • Posted

      Hi Susi - Johnny has given you some excellent thoughts and advice. We're not able to see the whole picture, though, so your doc will still have more information and you should feel ok with asking him/her all these questions, too! It's their business to make you well.

      Ok - broken ankle, is this the same one now having bone pain, if so, that is likely unrelated to lymph nodes, etc. If hives started about that time, were you put on antibiotics perhaps after repair of broken ankle? Hives from antibiotic allergy are very common (I get them myself from penicillin or related -cillins).

      Did the hematologist do a bone marrow aspirate? Johnny is right, the night sweats+ anemia + low WBC are concerning for a bone marrow disorder of some kind. These run the range from mild to worrisome, so what you need now is more information! Also you should have had a biopsy of at least one of the enlarged lymph nodes, like the one on your shoulder. Don't let them make you feel like a hypochondriac, this is potentially a serious thing - you should get it completely cleared up what is the problem, and you are entitled to be taken seriously.

      I hope your sister is doing well - 38 is young for CLL, but there are new medications which are very effective, and the younger you are at diagnosis, the stronger your body is to resist. Be sure your doctor knows of her illness - sometimes genetics caries an increased risk to close relatives, and twins are just as close as close could be.

      Be well!

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