Lambert-Eaton News Forums Forums Diagnosed: What now? How long to diagnosis?

Tagged: ,

  • Wanda Grischkowsky

    May 5, 2020 at 7:30 pm

    It took almost 15 years for a LEMS diagnosis. I was misdiagnosed with Fibromyalgia, MS and other conditions.

  • Dawn DeBois

    May 6, 2020 at 7:40 am

    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?



Log in to reply.