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Old 01-21-2009, 07:41 PM   #1
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Can someone please help me? Scared

I tested positive for Lupus but there were other blood problems too. Did anyone have to get a bone marrow test after being diagnosed with Lupus?

 
Old 01-22-2009, 12:24 PM   #2
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Re: Can someone please help me? Scared

Hi Sophie,

I'm sorry to hear your Dx's with Lupus as I am also for 8 years now.But I have not had a bone marrow test just wanted to say hi and let you know we have alot of great people in this website and they should be here to answer your question or maybe just let you know they care.

Please let me know what you find out I'll be thinking about you.

Take Care,
Mary

 
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Old 01-22-2009, 02:28 PM   #3
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Re: Can someone please help me? Scared

Sophie, hello & welcome to the group. I'm sorry about your Dx but glad that it will bring comprehensive testing, treatment & checkups---and thus much better odds for controlling the widespread problems lupus can bring on.

About your bone marrow test: did you ask WHY your doctors want to perform one? Are you anemic? Have a low red blood cell count? I *think* that if RBC is low, for some patients it's important to find out exactly what is suppressing production of new red blood cells (I think this productions occurs in bone marrow).

You could read reputable lupus authors to develop questions to ask your doctors. Are you near a library or major bookstore? Look for lupus hardcovers by Dr. Daniel Wallace, or by Dr. Robert Lahita.

Also, is your lead doctor a rheumatologist? Have you seen any other specialists---like a hematologist, maybe?

It's always a good idea to ask for copies of your bloodwork, esp. in the early stages of your drs. figuring out what is wrong with you & why.

Obviously I'm only a patient, but I think it makes sense to ask a lot of questions when you are in the diagnostic stage, especially when big tests are being ordered. I hope you keep posting---we'll look forward to hearing more. Until then, I send my very best wishes. Sincerely, Vee

 
Old 01-22-2009, 05:18 PM   #4
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Re: Can someone please help me? Scared

Thank-you Marys1358 and Vee J. It's good to hear any thing from anyone. I am keeping my blood work and the do c that diagnosed was an oncologist and hematologist. I am so afraid because they did a bone marrow test and I know that's a test for cancer.
Also, I have been in so much pain the last few weeks? What do you guys take for pain?
Please keep in touch I need someone who knows what I am going through. Are either of you able to work?

 
Old 01-23-2009, 05:33 AM   #5
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Re: Can someone please help me? Scared

Sophie, have your doctors met with you to discuss the bone marrow results, or was it just done?

As I said yesterday, I read that bone marrow tests are done on certain lupus patients. (I'm sorry, I know so little about this...)

All I can say is I hope you get clear answers ASAP about why it was done, results, any treatment(s) indicated, etc. But hopefully results will RULE OUT certain concerns, not add any new ones! We'll watch for your updates. Sending you my best wishes, Vee

 
Old 01-23-2009, 04:28 PM   #6
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Re: Can someone please help me? Scared

Thanks Vee, I get the results Wed. afternoon.

 
Old 01-23-2009, 06:46 PM   #7
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Re: Can someone please help me? Scared

Sophie, here is a quote from something I read regarding bone marrow testing and lupus. It says basically that a lot of hematology problems can be detected from a bone marrow test and also that this test can also be used to help a doctor decide on a treatment plan.

Last edited by Triciah614; 01-29-2009 at 06:36 AM.

 
Old 01-23-2009, 08:06 PM   #8
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Re: Can someone please help me? Scared

Thank-you very much Triciah. I know the doctor had other concerns about many things on the blood test. I am really scared and trying not to dwell on it too much.

 
Old 01-25-2009, 09:25 AM   #9
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Re: Can someone please help me? Scared

Sophie,

I know that it is very frightening right after being diagnosed as having lupus. So many things go through your mind and you can't help but wonder if your organs have been affected, what organs have been affected and how badly they've been attacked.

I'm glad that you found a doctor who is thorough enough to run extra tests so that he can help you. I read that you get your results back on Wednesday. Good luck and I hope that everything comes back okay. Please let us know how everything turns out. I'll be thinking of you.

Tricia

 
Old 01-25-2009, 11:04 AM   #10
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Re: Can someone please help me? Scared

Thank-you Triciah614. I have been to many doctors over the last 5 years for aches and pains and they have not found this. I had back surgery in October surely they did enough blood work to find it then. I don't know much at all about Lupus and it is all very baffling to me. It couldn't just show up one day, could it?

 
Old 01-25-2009, 08:21 PM   #11
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Re: Can someone please help me? Scared

Hi
I have had a bone marrow test because of Lupus. I was severely anemic at the time, and was having blood transfusions for the anemia. I tested negative for the Coombs antibody, so they knew it was probably not hemolytic anemia that sometimes happens with lupus. They wanted to test my marrow to see if red blood cells were being produced because sometimes lupus can shut down red blood cell production. My marrow was fine, and they said the anemia was an anemia of chronic disease. They said it was because I had so much inflammation going on at the time.

 
Old 01-26-2009, 03:24 AM   #12
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Re: Can someone please help me? Scared

Hi, I am 36 years old and have had lupus for 7 years now, but i have never been tested for bone marrow, my thoughts go out for you as i know that i get into a lot of pain, so i hope things go well for you.

 
Old 01-26-2009, 03:32 AM   #13
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Re: Can someone please help me? Scared

They need to do certain tests to find the Lupus, before i diagnosed my doc just said i had tendanitis, then the pain got really bad and i went to another doctor. i am 36 and have had lupus now for 7 years i am on plaquenil for 7 years and methotrexate for 3 years my pain is quite bad but i started to manage by my diet i know that if i eat potatoes, pasta, or bread i get alot of pain so i eat minimal amounts of these as well as tomatoes and capsicum. this seems to help me a bit. i have found that the sunscreen from aldi is excellent.
I have been in that much pain that i needed to do something, i was not coping at all with the pain i was in. every joint in my body including my jaw and fingers seizing going stiff and not being able to use them. That is why i tried the blood type diet.

 
Old 01-26-2009, 03:54 AM   #14
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Re: Can someone please help me? Scared

Sophie, in some people, lupus does seem to arrive out of the blue. In contrast, others have up's & down's for years (there's a sticky post at the top of the thread list with problems often seen early on in such people).

Lupus is called "the great imitator" because so many things seen in it are also seen in OTHER conditions (e.g., anemia, fatigue, joint pain) Sometimes the most "defining" things appear last. (For me, it was lupus-specific skin rashes.)

Often appropriate blood tests (say, autoantibody testing) need to be done at "the right time" (during a flare). Sometimes doctors do a "partial job". Of my 5-6 dermies, half did deep-punch biopsies, but only my last dermie did biopsy *plus* immune stain tests (it was the stain tests that produced results that are seen ONLY in lupus).

Even if doctors take your lifetime medical history, they don't necessarily recognize what that history suggests. Only my last rheumie reacted to my long list (which resembled that "sticky" I mentioned above). Earlier doctors clearly thought I was a liar, a whiner, etc.

Doctors can Dx multiple things & not look for a "single-bullet theory". I was treated by gastroenterologists, urologists, dermatologists, etc. None saw the connecting dots, although they'd talk to one another while I was sitting right there. They can "ditto" their colleagues too readily.

Doctors can get a fixed idea based on inadequate evidence, then adhere to it no matter what happens next. e.g., I had the misfortune to worsen during the years when "fibromyalgia" first became widely discussed & Dx'ed.

And really ABSURD doctors can decide that they know everything about you in the first 5 seconds, based merely on your appearance. I call this "the smartest kid in the class syndrome". Remember grade school, and that obnoxiously eager classmate who shrieked out "the answer" before the teacher even finished the question?

On the other hand: however cynical I am about the flaws in the process, I wouldn't have pulled thru a few times without doctors & I'd STILL be a mess without them. Plus, it was my responsibility to keep trying, which I did---and I know YOU will, too. So, you hang in there, OK?! Bye for now, V.

 
Old 01-26-2009, 08:23 AM   #15
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Re: Can someone please help me? Scared

Hi Sophie,

As for your question regarding lupus just popping up all of a sudden--it seems that mine did. I am 41 years old and have been healthy my whole life. I have always done some form of exercise and I eat healthy MOST of the time. I am still a little overweight in spite of my efforts. I think it's because I starved myself for 15 years trying to stay thin.

Anyway, I had a hysterectomy in June of last year and 3 months later, I started hurting and feeling soooo tired. I am the type of person who can feel perfectly normal going on 3 or 4 hours of sleep a night, so when I was sleeping 10-12 hours a night and still needing a nap during the day, I knew something was wrong. I went back to my OB/GYN and told him my hormones were out of whack. He tested my hormones, thyroid, diabetes and autoimmune antibodies. The only thing that tested positive were the antibodies. Anyway, I still can't help but wonder if my hysterectomy triggered my lupus to come out. By the way, my hysterectomy was sooo easy. Everyone told me that I'd be in pain, bloated and so tired afterward. I wasn't any of those and was back exercising two days later on my elliptical. I wouldn't call it a traumatic event, but maybe it was to my body. Maybe the lupus was waiting silently until something happened (like surgery) to make it come out--I don't know..... I still get confused on how quickly it appeared.

I know the whole process has been frustrating, but I can't imagine how much worse it would have been to have to get a bone marrow test. Please let us know what you find out--we are all thinking of you and hoping for the best.

Tricia

Last edited by Triciah614; 01-26-2009 at 08:24 AM.

 
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