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Welcome to the forum! Introductions and LEMS diagnosis- How long did it take for your diagnosis?
Welcome!! My name is Dawn DeBois, columnist here at Lambert-Eaton News. After decades of unexplained progressive neuromuscular symptoms, I was diagnosed with LEMS in the fall of 2016. I also have multiple other autoimmune diseases that I manage, right along with LEMS. My way of dealing with stress is to write, so I started my blog ‘The Battle Within‘ and became a Mighty contributor as a way to educate others about rare diseases and about living with invisible autoimmune diseases.
My LEMS is fortunately managed with a combination of amifampridine, mestinon and IVIG. As thankful as I am to being able to manage my rare disease with meds every 4 hours and IVIG treatments ever four weeks, I am an autoimmune patient who is looking forward to the day that the “key” to turning off the immune system from going into attack mode on our own body is found. Until then, I’m going to do all I can to support others in their quest for balancing their lives with their management of their invisible illnesses. I accepted this role as moderator of the LEMS forums to help other patients find information and support around our mutual uninvited counterpart, Lambert-Eaton Myasthenic Syndrome.
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