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How long to diagnosis?
How long did it take you to get a LEMS diagnosis? What were you misdiagnosed with along the way?
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2 Replies
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It took almost 15 years for a LEMS diagnosis. I was misdiagnosed with Fibromyalgia, MS and other conditions.
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Hi Wanda,
Unfortunately, that’s not an uncommon situation. I’m hoping that neuros and rheums are becoming more aware of LEMS. My prior neuro got stuck in constantly looking to see if I had MS. I do have areas of demyelination in my brain so she kept watching those. When results came back questionable or inconclusive, she didn’t dug further. I also have a fibromyalgia diagnosis; but other than the muscle spasms, I don’t continue to have the leg pain/foot pain that was unbearable in my 30’s since going on my LEMS meds. How about you? Are your fibro symptoms controlled now? I recently had trigger point injections in my traps due to the spasms causing nerve impingement. When my new rheum was doing them I told him how I know other LEMS patients who get the “its like you have rocks in your back” comments when seeing a new provider. Do you get those, too?
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