The Myelodysplastic Syndromes Foundation
The MDS Foundation is a multi-disciplinary, international organization devoted to the prevention, treatment, and study of MDS, especially through the ongoing exchange of information between researchers, patients, and physicians. The organization is dedicated to furthering the research of MDS. It invites young investigators to submit their proposals for either basic research or clinical management and offers grants to a select few.
I was diagnosed with MDS several years ago. I had no symptoms at that time other than the bruises on my arms. Later I developed bruises on my knees. Prior to this diagnosis I had shingles of my left eye. I was treated at Camino Med Clinic in Sunnyvale, CA. A few days after that diagnosis I became physically ill. I had no appetite and lost 5 lbs. In a short time. My life changed–I went from bed to bathroom to sofa and repeated that limited activity for days and weeks. During that time I had severe left side leg, thigh and neck pain. Because the medical people could not see the pain they could not appreciate that I was really in pain. If there was a relationship of one disease to another it was not mentioned. The dr’s in the clinic don’t verbally communicate–all the information about the patient is on the computer. Although I was seeing a physician(both a hematalogist and a D.O.) I did not receive the care I needed. I feel that I have fallen through the cracks–maybe i’m not sick enough! I do have lab work-CBC- every month. I don’t know what the future holds for me.
Donna, we are very sorry to hear that you are not receiving the care that you need.
You may find it helpful to join an MDS support group in your area so that you can speak with other MDS patients about their experiences. The Leukemia & Lymphoma Society has a number of support groups for blood cancer patients and their families located in California. Members there may be able to help you find a group specifically for MDS patients.
If you prefer, there are online forums for MDS patients that would also allow you to connect with other patients. In particular, I recommend Marrow Forums.
Additionally, you may want to consider switching physicians if you are not pleased with your current ones. Members of a support group or online forum may be able to recommend physicians.
Hi – I too had been diagnosed with MDS years ago. No problems till 7 years ago when my counts bottomed out. I received ATG serum and have been fine. Last week I have been diagnosed with RAEB-1. Does anyone else have this and is there a treatment given at an early stage?
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