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Which advice would you give to someone who has just been diagnosed with Sweet Syndrome?
See some advice from people with experience in Sweet Syndrome to people who have just been diagnosed with Sweet Syndrome
Just go day by day
Posted Aug 11, 2017 by Lisa 3150
Don't give up. There is always something new to try if you can just figure out what.
Do your own research and find a doctor willing to work with you. Understanding the disease process and a teachable doctor saved me. Finally got it under control and kept me from probable organ failure.
Cholchine is a B12 depleting drug, but none of the doctor knew it. You are supposed to have your levels monitored on long term treatment with it. I already had undiagnosed pernicious anemia before the Sweets diagnosis. B12 helps in some cases of uncontrollable sweets. Many of the symptoms are actually secondary to anemia of chronic inflammation. Not everything should be blamed on Sweets. First rule out everything else that you can do possibly do something about. Be vocal.
Do your own research and find a doctor willing to work with you. Understanding the disease process and a teachable doctor saved me. Finally got it under control and kept me from probable organ failure.
Cholchine is a B12 depleting drug, but none of the doctor knew it. You are supposed to have your levels monitored on long term treatment with it. I already had undiagnosed pernicious anemia before the Sweets diagnosis. B12 helps in some cases of uncontrollable sweets. Many of the symptoms are actually secondary to anemia of chronic inflammation. Not everything should be blamed on Sweets. First rule out everything else that you can do possibly do something about. Be vocal.
Posted Oct 19, 2017 by Julie 400
Research...!
Join Facebook communities specific to SS and communicate with others who are in the same situation as you are.
SS is rare, and often you can feel alone, I did for over 10 years and it was scary! Talk to people and learn about your condition which will help you to learn to live with it. SS is not sweet! In fact it's horrible at times but knowing that your not alone makes you feel so much better... people want to help because we all feel the same.
Join Facebook communities specific to SS and communicate with others who are in the same situation as you are.
SS is rare, and often you can feel alone, I did for over 10 years and it was scary! Talk to people and learn about your condition which will help you to learn to live with it. SS is not sweet! In fact it's horrible at times but knowing that your not alone makes you feel so much better... people want to help because we all feel the same.
Posted Oct 20, 2017 by Wee_mcn_lens 2000
