MDS is a bone marrow failure disorder
MDS is a blood cancer
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Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

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  • in reply to: None of this makes sense #30179
    Stephen Smith
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    I was diagnosed with early onset MDS one year ago. My only complaints were fatigue and mouth ulcers. My doc said both symptoms were a coincidence and gave me a lecture on dental hygiene. A Google search disclosed that the mouth ulcers are related to autoimmune problems. I got rid of that doc and the Foundation made an appointment with a doc listed in the Center of Excellence. After genetic testing and a bone marrow biopsy pre-MDS was confirmed. I have low neutraphils. I get the mouth ulcers every 21 days without fail. They last 7 to 14 days. They vary from a minor nuisance to debilitating. I use a prescription lidocaine mouth rinse. My doc never heard of this side affect but knows it is related. I had the opportunity during a webinar to ask Dr. Smith from John Hopkins about them. He said the mouth ulcers are definitely related and he has had patients with them in the past. Unfortunately he said nothing could be done to prevent them. Best of luck.

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