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  • ANYONE who's experienced PANCYTOPENIA please read and please help!

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    Old 11-10-2013, 07:11 PM   #1
    beth9936's Avatar
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    beth9936 HB User
    ANYONE who's experienced PANCYTOPENIA please read and please help!

    Exactly 6 days ago, my mom was directed by our family doctor to get to the nearest hospital ASAP because all of her blood levels were - and still are - extremely low. She is currently still in the hospital, and has had a ton of blood tests done, but hasn't tested positive for anything yet. She had a bone marrow biopsy done early on Friday morning, and was supposed to receive the results later the same day, but of course the doctor failed to get it sent out fast enough for us to have the results back the same day, so we will be receiving those results tomorrow.

    She has so far seen a Hematologist and a Rheumatologist who are both baffled by her symptoms, and can't figure out what is causing her to have Pancytopenia. They have said that until they have figured out the cause, she won't get better, because they need to know how to treat her.

    The doctors are confused, as is our family, because none of my moms symptoms add up and can be linked to any of the causes of pancytopenia. So what I am hoping and praying for (besides my mom to be okay) is that I can give a play by play of my moms health background as well as symptoms she's experienced over the bast two years leading up to this, and that MAYBE there will be someone who has experienced something similar.

    First I will begin with my mom's age, she is 55 years old, she has always been active and healthy. She was never exposed to any kind of radiation in her past, or chemicals of any kind.

    4 Years ago, she began having problems with her lungs. It came out of nowhere, but she was having difficulty breathing. This took doctors 6 months to figure out, but after multiple opinions and wrong diagnosis's they were finally able to figure out that it was an auto-immune disorder called hypersensitivity pneumonitis, and she was provided with treatment that helped her keep it under control for the most part.

    Everything seemed to be going well, besides the odd joint pains which she just assumed to be from running in the wrong shoes or riding horses, which could still be the case because at this point we aren't sure of anything yet - however I thought it may be important to add in.

    2-3 Months ago, out of the blue, my mom found a bald spot on the front of her scalp, about the size of a dime. She had been very stressed and thought maybe stress caused it, but after seeing the doctor she was diagnosed with alopecia areata. Which apparently can still be brought on by stress, so she had steroid injections done to the bald spot and began topical medication for it.

    About 3 weeks ago, for probably a week straight, my mom had experienced really bad indigestion at night time. Which is really unusual for her, but she would be up in the night repeatedly having to take tums. She quit drinking diet coke because she thought maybe that was the cause, even though she's always drank it, but it was the only thing she could think of that could have been causing it.

    Now 2 weeks ago, she started experiencing hives. BAD. They would come and go, and were much worse in the mornings and evenings. She was able to get them under control most afternoons by bathing in oatmeal and applying lots of lidocaine and types of creams, but a few days even in the afternoons there was nothing she could do about it because nothing helped and they are EXTREMELY itchy (she still has them). I mean itchy to the point where she has been crying and hyperventilating because its painful. The hives are what brought her to our family doctor, well twice, the first time our family doctor said maybe she had a reaction to new vitamins she was taking, but when they didn't go away and a week had gone by she went to see our doctor again and had blood tests done. Thats when she was sent to the hospital. These hives are like nothing anyone has ever seen before, they get swollen and red and rise above her skin and cause her not to be able to move. OH and during the duration of her hives she also experienced/experiences chills, to the point where her lips are quivering and she's shaking.

    During the time that the hives first came, so did strange unusual joint pain that my mom was concerned about. It also came and went, like the hives.
    She would feel it in her left arm, and in her left hand/thumb. There was a day when she couldn't even use that hand. Just yesterday she had it in her right shoulder, and she could hardly move because it hurt her so bad.

    She has also experienced cankers quite frequently over the past few years.

    So to sum up her symptoms, and in order:

    Hypersensitivity Pneumonitis
    Joint pain in the knees, and crotch area
    Alopecia Areata (Hairloss)
    EXTREMELY ITCHY Hives, ALL OVER HER BODY - forgot to mention that
    Left arm + Left thumb joint pain
    Right Shoulder joint pain

    PLEASE help me or give me any thoughts you might have on this, if you have ever experienced any of these symptoms and have had pancytopenia, please let me know which symptoms and what caused the pancytopenia. My mom is such an amazing woman and it is extremely heartbreaking watching her go through this. I would really really appreciate any kind of input that might be useful, thank you for your time and I apologize for the lengthy post.

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    Old 11-16-2013, 10:07 AM   #2
    Fizzickle's Avatar
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    Location: Hampton, GA USA
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    Re: ANYONE who's experienced PANCYTOPENIA please read and please help!

    Beth, I have pancytopenia. This simply means that the red and white blood cells plus platelet counts are low. I am anemic and have low hemoglobin.

    I am certainly no expert on this. It was picked up in a physical exam and hit me like a bolt out of the blue.

    The answer to your mom's problems will probably show up in the bone marrow results. It will tell the hematologist/oncologist if the bone marrow itself is affected by disease to the point it can't make enough red and white cells plus platelets. That's the situation I find myself in now. Usually this is accompanied by tremendous fatigue.

    Like your mother, I get intense left shoulder pain plus arm and hand involvement brought on by activity. I've assumed this is angina. Lowered hemoglobin plus coronary artery disease (both of which I have) can result in portions of the heart simply not getting enough oxygen, thus bringing on angina. At least that's my theory.

    I haven't experienced hives. But I have had alopecia areata, leaving quarter size bald spots. I take a B vitamin which seems to allow these to quickly regrow hair. And from my experience, stress is the villain for my alopecia. For example, my wife's sickness and death caused several of these.

    Hope the bone marrow biopsy doesn't show disease and that your mother recovers from this without further incident.

    Best of luck to you and your mom.

    Last edited by Fizzickle; 11-16-2013 at 10:15 AM.

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