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just diagnosed

This topic has 6 replies, 1 voice, and was last updated 17 years, 8 months ago by LorettaV.

Viewing 7 posts - 1 through 7 (of 7 total)

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August 22, 2006 at 1:25 pm #14543

waltraut
Member

Hallo All

My brother, aged 40, has just been diagnosed with MDS. This is all very new to me (I am sure as soon as he is up to it he will join this forum). We live in Namibia and he was so sick that he was in intensive care for a week. They took spinal fluids there and could not determine what was wrong. I have many questions but here is one that I cannot find info for:
He has extreme backpains, so much so that he cannot walk – is this something not related to MDS??? Can anyone advise.

Regards

Waltraut

August 22, 2006 at 3:59 pm #14544

frank
Participant

i don’t think the backpains are relaed to MDS. i was in this age, too. only thing for me is to have blood transfusion once a while(6-8 weeks).

hope it helps.

Frank

August 24, 2006 at 7:20 am #14545

waltraut
Member

Hallo Frank

emailing again – did not see the “quick reply” section.

Thanks for your reply!

May I ask?? How are you feeling and coping?

Regards to you and your family

Waltraut

August 25, 2006 at 4:39 am #14546

willie
Member

Waltraut Did the doctors take a bone marrow biopsy? Willie

August 27, 2006 at 1:07 pm #14547

waltraut
Member

Hallo Willie,

Thanks for asking. A bone marrow biopsy was done while my brother was in ICU. Then they only saw that white, red and platelets seemed to have dissapeared (still have to get up to speed with the terminology). After release he was seen by an internist that had the samples retested by several labs, thus MDS. A proffessor from Cape Town called and wants to see my brother ASAP.

Regards to your wife

Waltraut

August 27, 2006 at 6:31 pm #14548

bety
Member

Dear Waltraut, Could the back pains be related to the spinal tap? You might want to inquire.
All the best, bety

August 28, 2006 at 3:37 am #14549

LorettaV
Member

MDS usually causes extreme fatigue. When my hemoglobin counts were very low 6 or 7, those red cells that were carrying oxygen around my body were not doing their job and I was breathless, and could barely walk, but not because of back pain. Check his blood counts with what is normal. Find out % of blast cells (the badly formed immature cells.) If he had both a spinal tap and a bone marrow biopsy that might be reasons for back pain. Ask dr. lots of questions. Is your brother seeing an oncologist/hemotologist?
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