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  #1  
Old Sun Dec 9, 2018, 06:21 AM
Mich67 Mich67 is offline
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Join Date: Dec 2018
Location: uk
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Smile Hello and a couple of questions! ;)

Hi everyone,

I'm new here and while I understand that no one can diagnose or give specific advice, I am interested in hopefully getting some opinions from the wealth of experience here.

I am in between medical appointments and have a couple of weeks to wait until I speak to a doctor. After being given only a tiny piece of information over the phone after a test, and then not coming up with much myself online, (other than scarey stuff) I thought I would ask here.

I am female aged 51 and been told I have 'hyperactive bone marrow' after a pelvic scan for leg weakness and to see my doctor to get tested for anaemia. That's literally all I was told but it's been enough to make me worried.

I am trying to figure out what is the chicken and the egg here? does anaemia cause the bone marrow issue or is it the other way round?
Also, is this a common problem in older women? When the doc told me this on the phone, he kind of brushed it off by saying 'this is common in women.'

I wouldnt be unduly concerned if it weren't for the fact that I have been unwell for quite some time. Lots of bone/joint pain, issues with both shoulders and some walking difficulties. Crippling fatigue.

The most they have come up with after a year of spinal/brain MRIs and tons of bloods is unexplained neurological issues.

I have always had low ferritin levels but they are within range. The only thing that seems worth noting on a blood test in August is raised IgM but that was brushed off as insignificant.

I guess I am hoping that a lot of my fatigue etc can be explained by a treatable form of anemia! I am assuming that if there was anything more sinister looking on the pelvic MRI then they wouldnt have kept me waiting for this result?

I wondered if 'hyperactive bone marrow' picked up on MRI is common? It seems most people with marrow disease are initially flagged up due to their abnormal bloods, wherease mine seemed normal in August when last done. Are there more complex blood tests needed to determine anemia other than a CBC?

I am in the UK. Thank you in advance for reading and for any info or experiences! Mich
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  #2  
Old Mon Dec 10, 2018, 11:11 AM
Hopeful Hopeful is offline
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Location: California, USA
Posts: 718
Hi Mich67,

Have you had your B12 and folate levels measured? Low levels can cause neurological symptoms.

Is your hemoglobin low? Did you fast for your ferritin tests?

Definitely get a hold of all your blood and MRI results so that you can offer cohesion between the different doctors.

Hopefully you get some answers at your next appointment!
__________________
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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  #3  
Old Mon Dec 10, 2018, 01:19 PM
Mich67 Mich67 is offline
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Join Date: Dec 2018
Location: uk
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Hi Hopeful and thanks so much for taking the time to respond!

Yes I have been tested for B12, Homocysteine and Folate. All normal allegedly. Although the folate was only 5.3 (1.9-25.0).

Ferritin says 21ug (13.0 - 150.00). I didnt fast for it.

I found my old GP notes and 'low iron' was noted in 2016 at '13'. This was never passed on to me.

I had numerous CBC last year all the RBD,WBC, etc totally normal!

I am waiting for the letter from the people who did the pelvic scan so I can call my GP and book some more tests.

In the meantime, I am left wondering how I could have 'hyperactive marrow' with all these normal levels, leg weakness, fatigue and still no diagnosis.

Of course I am wondering if something has been missed all along! Anyone elses experiences of being told they had 'hyperactive marrow' welcomed.

Thanks again.
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  #4  
Old Mon Dec 10, 2018, 06:04 PM
LaurenInLA LaurenInLA is offline
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Location: Fort Lauderdale
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Smile

I'm unfamiliar with hyperactie bone marrow but yes, anemia is diagnosed via CBC.

Good luck
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