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AA Aplastic anemia

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Old Wed Jan 14, 2015, 02:15 AM
Casimz1986 Casimz1986 is offline
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Location: Wyoming
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Unhappy New Member and Have Questions...

Good Evening All!


Bear with me, this is a long post, and appreciate any help! Thanks!

My name is Casi, I'm 28 and live in a desolate area of Wyoming. I have a few questions, but would first like to share a little bit of what's going on with my chaotic health.

About two and a half years ago at my work we had a blood drive and I wanted to donate blood. They had me fill out paperwork and then the nurse pricked my finger to do a quick check before going on to donating (I'm not sure what the machine is called or what this procedure is called; I have terrible memory!) She ran the first test and had a confused look on her face and then said, "HMMPH, let me get more blood. I think this one was an error." She pricked a different finger for the second test and ran it and when it was done, she had that confused look on her face and said, "Well, that's strange. It's still saying the same number. I have never seen red blood cells that low. I'm sorry, but you can't donate because you're anemic. Please take our pamphlet that gives information on foods that contain iron." That was the end of it, and at the time I didn't think anything of it and continued on about my day. I always knew I was anemic because most of my life I have been. I also knew that I have to eat foods that contain iron and I was advised to take supplements. I have tried taking multiple kinds of iron, and with each of them, they make me feel incredibly sick.

Later on, I noticed that gradually my menstrual cycle had become irregular and extremely heavy. My periods would last for more than a week and then stop. Then to make it more frustrating, I no long have a normal period. It's very sporadic and can last from 7-14 days, stop a few days, and then start all over again. I've had my yearly paps and each time they say everything is normal. Other symptoms I have been having is easy bruising, heart palpitations, and ringing ears (which within the last few months it has started). I'm always cold and it could be 90 degrees and I'm bundled up. People I work with even think I'm nuts. Around two years ago, I developed pain in my shoulder and thought I had torn my rotator from exercising. Had done an MRI and everything seemed fine according to my doctor. Now, the pain has become worse and now I can feel it in my ribs and down my shoulder blade. I'm not sure if this is related to whatever else is going on with my body, but with everything going on, I feel like I wreck! I've always been exhausted, and if I could get away with it, I would sleep FOR DAYS! I used to be extremely active and exercised regularly with no problem before. At work, I would do tasks that required lifting, moving around, and there had been times I had to stop to take a breather because I felt like passing out. I used to run miles each day before, and just recently I tried running two miles and I felt like I was going to pass out and/or throw up (which I never felt before). I recently did a Tough Mudder race in September 2014, and yes it's grueling, but I spent months before to prepare for it. I completed the race, but the next two weeks, it took a major toll on my body. I wish I could share the picture of my legs the morning after the race. I had major bruises ALL over. Once again, I thought, "ok it's just my anemia."

I recently went to the doctor last week about my issues and my doctor seemed to be puzzled and wanted me to do a CBC. He thinks its a thyroid issue and he is at a loss as to why my shoulder hurts so bad (it keeps me up at night, EVERY NIGHT). When I searched my anemia symptoms I have been having, aplastic anemia came up as a possibility.

My question is, how long does it take to do a CBC and get results? I had my blood taken this Monday, and I haven't heard anything (which is a good sign, right?) I live in a VERY small town, population 2,700, with a very poor medical system. There's other personal stories as to why they have a bad reputation. I'm wondering though if it's a life threatening ordeal like aplastic anemia, would the doctor contact me right away? I've read several stories of people diagnosed with AA and they say their doctor contacted them right away, within that day. Does this always happen usually? The clinic here takes forever and sometimes forgets to contact people about results.

I apologize for such a lengthy post, and I know I may be jumping the gun and over-worrying. I feel like now, I'm left in the dark with so many questions and I don't know if this clinic is going to actually catch a problem if I do have one. The reason being, is 5 years ago I had lost my sister-in-law to leukemia and she went to the exact same clinic SEVERAL times to different doctors about her symptoms and pain. No one caught it until it was too late.

Perhaps in my case, it's just regular anemia but I feel like my body is slowly running into the ground. I don't feel like how I used to. I try my best to eat healthy, and even with that, I still feel so run-down.

I'm glad there is a forum, and like I stated in the beginning, I'm grateful for anyone who takes the time to read my "worries". Any suggestions or advice are appreciated!!! Also, it's great to see AA patients pull out of their disease and to live a wonderful life. Bless all of you!

-Casi
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Old Wed Jan 14, 2015, 02:45 AM
Hopeful Hopeful is offline
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Hi Casi,

You should contact you doctor ASAP tomorrow morning. They should have the results unless they sent them to an outside lab. I usually get my CBC results the same day, sometimes within an hour.

Do not rely on the doctor to get back to you. Unfortunately, it sounds like you will have to be a strong self-advocate. Is it possible to seek treatment/diagnosis in another town? If your counts are low, you will likely need a BMB, but it doesn't sound like you would want it done at this facility!
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Wed Jan 14, 2015, 09:20 AM
Neil Cuadra Neil Cuadra is offline
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Casi,

Most of your symptoms match those of a bone marrow problem. I'm a caregiver, not a physician, but I think you could be putting yourself in danger by racing, so you should avoid it until you have a medical evaluation.

I don't know how blood and bone marrow issues would be related to your shoulder pain, except that if you have low blood counts then other medical problems are easily aggravated.

Small town doctors are unlikely to have experience with or even know much about aplastic anemia or similar diseases. You can't blame them for that -- these are rare diseases -- but they should know enough to alert you to the seriousness and refer to you to a major medical center with a better chance of diagnosing and treating you. For example, you may need to go to the University of Colorado.

Despite some urgency because of your current set of symptoms, there's one good reason not to panic: you've apparently been living with anemia for quite some time. For you it's been a chronic condition, but I still encourage you to look into it promptly.
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Old Wed Jan 14, 2015, 11:22 AM
Casimz1986 Casimz1986 is offline
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Location: Wyoming
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Thanks!

Thanks for replying hopeful and Neil,

Yes, this clinic is extremely small and there's multiple times from several people I know where they miss patients' health issues and it becomes worse. Such as my sister in law. She went four months for passing away with at first mild issue that ended up turning to life threatening at the end. They overlooked everything with her even her CBCs and by time they realized the problem, she was life flighted to the nearest major city Salt Lake City, to the a university of utah. By time she was admitted and receiving blood transfusions, it was too late and passed away shortly after. I'm worried about this clinic because theyre only general practitioners and I don't think they deal with serious illnesses that often. I have known others who had medical conditions and ended up getting worse and had to go to utah to get help. I hope it's nothing serious and I will be calling today and asking for a copy of my CBCs. Thank you and I appreciate your input!

PS

I haven't don't any races since that one because it really wore me down. Especially with all the bruising I had and my friends who participated, thought it was odd how much I bruised compared to them. They only had a bump or a scrape. So no more races until i figure out what's going on! 😔
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Old Fri Jan 16, 2015, 04:12 PM
curlygirl curlygirl is offline
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I was going to say what you just said - a family we met at a conference had a child develop auto-immune hepatitis while they were skiing in Utah, they life flighted her to a larger Utah hospital. Once recovering they flew her home to the east coast where she preceded developed into Aplastic Anemia (hepatitis-Associated Aplastic Anemia is a thing.) But, what this tells you, is that if you have aplastic anemia they wouldn't (or shouldn't) treat you where you live. I live in a large suburb of a major east coast city. The suburb has its own pretty good hospital and when they saw my son's blood counts they immediately transferred him 45 min away into the city. Also, like I said where I live is not a small town but it was obvious the Pediatric ER had not seen Aplastic Anemia before (as it's very rare). While they were loading my son up in the ambulance to go from one hospital to the other the ER nurse said to me," If you think of it, when you find out what he has will you let us know?" I didn't think of it, actually, but the transferring ambulance driver checked in on my son after another run a few days later so they may know now. Not to scare you but if you have Aplastic Anemia you will have to travel to a major metropolitan hospital.

But definitely call for the results of your CBC. It could be aplastic anemia but if it isn't it could be a clotting problem, as well (from what you said after your race).
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