Wondering whether I have MDS

[janq]

My doctor is concerned about low white blood cell counts over the past 12 months. I generally have blood work every three months with my PCP and every 4 to 6 months with my nephrologist. My PCP said that next time if the white cell count is still low she wants me to see a specialist.

I've been researching on the web about LWBC counts and it lead me to this site. Has anyone else had this situation as the beginning of their journey with this disease?

Thanks for responding.

I won't be checking back for three weeks, since I'm taking a pilgrimage to Bosnia and Italy. But I would appreciate any information. I've been reading the posts, and have learned a great deal about AA and MDS.

Thanks for the site.

[Neil Cuadra]

janq,

Have you ever had a bone marrow biopsy? Diagnosis of MDS is usually made after a bone marrow biopsy and aspiration. If you are in Lecanto Florida then you aren't very far from the Moffitt Cancer Center, which is a major MDS treatment center. If you go there for a consultation and possible testing, the MDS specialists there should be able to give you answers to your questions.

Since you'll be traveling internationally, you might want to ask your doctor about any precautions to take, such as having recommendations for who to contact if you have any medical issues while in Europe, or bringing along a summary of your medical condition, history, or treatments, just in case.

[janq]

Originally Posted by Neil Cuadra

janq,

Have you ever had a bone marrow biopsy? Diagnosis of MDS is usually made after a bone marrow biopsy and aspiration. If you are in Lecanto Florida then you aren't very far from the Moffitt Cancer Center, which is a major MDS treatment center. If you go there for a consultation and possible testing, the MDS specialists there should be able to give you answers to your questions.

Since you'll be traveling internationally, you might want to ask your doctor about any precautions to take, such as having recommendations for who to contact if you have any medical issues while in Europe, or bringing along a summary of your medical condition, history, or treatments, just in case.

I'm due to have further blood tests in November. If my PCP doesn't like the results then I'll probably be having further tests including a BMT, etc. We have a very good group in Lecanto, but I believe they recommend Shands in Gainesville when they want further testing. But, I'll certainly keep your recommendation in mind. when discussing further with my PCP. It's really great to have this site as a resource.

I did have precautionery vaccines before traveling and carried an antibiotic with me; which, fortunately, I didn't need. But it's really good to be back on USA soil.


Thank you again.
janq