Thread: MDS Low Risk
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  #19  
Old Sun Oct 22, 2017, 12:55 AM
Naive Naive is offline
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Join Date: Jul 2016
Location: Gold Coast, Queensland, Australia
Posts: 77
Hi Mary - lee,

Yes, I’m under the care of quite a few Specialists. I see my Haematologist every month, my Physician every three weeks, my Neurologist every three months and my Surgeon every three months. As you can see I have a number of other illnesses/disorders as well as the MDS.

My initial BMB showed dysplasia and slightly increased blasts with one cytological abnormality. My next BMB showed dysplasia and the same chromosome abnormality but the blast count was normal and overall the bone marrow had improved. This was without any treatment besides replacement of nutritional deficiencies. So still MDS but improved. All I’ve had was Neupogen injections to raise my neutrophils but I don’t need these injections any more either.

Now all I need is to get off the transfusions and I wouldn’t even know anything was wrong. That is...besides the MS and the intermittent, chronic bowel obstruction due to adhesions (cause of the nutrition problems).

I’m lucky that I also have a very good, involved GP who also monitors my blood results.

All in all I have very good medical care but that took a lot of work on my part and moving on from doctors who didn’t meet my needs or whom I couldn’t relate to.

I can’t stress enough that you need a Doctor who is very experienced in MDS or blood cancers as a whole.

Good luck.

Carol
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