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Myelodysplastic Syndrome and Sjogren's

Blood Cancers & Disorders | Last Active: May 24 4:18am | Replies (16)

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@loribmt

Welcome to Connect @sjjs You popped into the perfect support group with members like @suetex who also have MDS and Sjogren’s. How long ago were you diagnosed with Myelodyplastic Syndrome? Are you on any treatment program to slow the progression?

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Replies to "Welcome to Connect @sjjs You popped into the perfect support group with members like @suetex who..."

Hello Lori, Thank you so much. I have been anemic for a very long time and was told it was idiopathic. It was not until I saw a hematologist and a resultant bone marrow biopsy that it was confirmed. For about the last year, I've been taking the EPO injections every 4 weeks. The concern now is that some of my red blood cells are becoming tear-shaped. I am going to see Dr. Casey O'Connell at USC Keck on June 4th. Regarding Sjogren's, I have had dryness throughout my body for over a few decades, so we are suspect but not confirmed. I did have one blood test 2 years ago, and it was negative. I just had my rheumatologist in LA run it again and a complete autoimmune panel. I understand that a lip biopsy is the determining factor, but I am not ready yet. I have studied medicine, especially nutrition, for over 50 years, having a son, Jason, with a rare genetic metabolic condition. Our story is on fiberwater.com on the history link. My sig other has CLL and prostate cancer. Thank you again, Lori,