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What Was Your Reaction to Your LEMS Diagnosis?
Each of us has a unique reaction to our LEMS diagnosis, but there are some commonalities too. How did you feel? What was your first reaction? And why? It took 9 years from first onset until I was diagnosed. I had a very strong feeling when my neurologist said, “You’ve got Lambert-Eaton Myastheic Syndrome.” I think I’ll share this at our Meet and Greet, September 14th at 4 PM, Eastern.
In the meantime, here’s my Flash Briefing on the subject. -
2 Replies
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I’d have to say my reaction to my diagnosis was one of expectation. They had already tested for every other syndrome/disease besides LEMS and everything had been negative. I asked my PCP if they had tested for LEMS and he had informed me that they had not. When I saw my new Neuro, I asked him if I should be tested for LEMS and he didn’t think that was what I had. Apparently, he gave it some thought because when I went for my blood counts 2 weeks later (because I’m on Cellcept), he added a VGCC antibody test.
When my results came back positive, I wasn’t really surprised…I sort of expected it to the point that I had begun to do some deep research into it. But I did feel a sense of relief in the fact that seeing it in black and white and now knowing what was wrong, we could focus on what could be done to help me.
Also, I felt relief knowing that I wasn’t crazy! You know that something is seriously wrong but when test after test comes back negative and so much time has passed, you can go to a place that even you begin to question if it’s all in your head…or at least I did for a time.-
@mhudakcollins thanks for sharing. Expectations! I get that. For me, I’d even say excited. After 8 years to finally find out, it meant we could finally make a treatment plan. That was bigger than big!
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