Comments on: The Myelodysplastic Syndromes Foundation http://www.mdsbeacon.com/links/2009/05/01/the-myelodysplastic-syndromes-foundation/ The MDS Beacon provides extensive, up-to-date news and information about myelodysplastic syndromes. Its mission is to be the leading Internet resource for MDS patients, their families, and others interested in myelodysplastic syndromes. Tue, 07 Feb 2012 18:33:15 +0000 hourly 1 By: Susan Luke http://www.mdsbeacon.com/links/2009/05/01/the-myelodysplastic-syndromes-foundation/comment-page-1/#comment-2888 Susan Luke Mon, 10 May 2010 23:57:02 +0000 http://www.mdsbeacon.com/?p=7324#comment-2888 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? 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?

]]> By: Julie Shilane http://www.mdsbeacon.com/links/2009/05/01/the-myelodysplastic-syndromes-foundation/comment-page-1/#comment-2249 Julie Shilane Thu, 01 Apr 2010 18:06:47 +0000 http://www.mdsbeacon.com/?p=7324#comment-2249 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 <a href="http://www.leukemia.org/all_page?item_id=4388" rel="nofollow">support groups</a> 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 <a href="http://forums.marrowforums.org/" rel="nofollow">Marrow Forums</a>. 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. 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.

]]> By: DONNA BLANK http://www.mdsbeacon.com/links/2009/05/01/the-myelodysplastic-syndromes-foundation/comment-page-1/#comment-2230 DONNA BLANK Wed, 31 Mar 2010 04:23:48 +0000 http://www.mdsbeacon.com/?p=7324#comment-2230 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. 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.

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