Hello, just diagnosed.
Hi, I’m Tim. I (30 male) have been feeling simply terrible for about 14 months now with no answers until a couple days ago.
My symptoms are probably like most, very bad leg weakness that resulted in my legs giving out for no good reason, generalized fatigue and weakness, bit of diplopia and blurry vision, and all the symptoms got VASTLY worse in the heat of last summer. I went from running and cycling all the time to being worried that if I walked too far from home I wouldn’t be able to walk back. Ended up mostly giving up walking any more than absolutely necessary and substituted yoga as my workout.
I’ve had a neurologist for over a decade due to epilepsy, and he proved a bit difficult to deal with, as I didn’t really feel taken seriously. MRI was clear, blood tests for MG were clear, no clinical weakness noted during exams…I wasn’t surprised. Long story short, he referred me to another neurologist who did an EMG and nerve conduction test and found the tell tale signs of LEMS. My nerves did not respond properly until I activated my muscles, the shock test really confirmed it.
Unfortunately Firdapse is probably not the answer for me because of my preexisting epilepsy, though if it came down to it I would absolutely take the risk, just to see.
For now I’m on pyridostigmine and this is anecdotal, but I’m feeling a FAR bigger difference than other anecdotes or literature has suggested I would (not saying anyone’s wrong btw! We are all different) To be clear, it’s not back to normal by any means but the difference is significant. I don’t feel like I’m going to fall down walking down stairs or just around the house.
I’m young and a nonsmoker so the chance I have an associated cancer is probably quite low thankfully but of course I’m going to be screened anyway.
Just wanted to have an outlet and a group of people who are going through the same thing.
Question: has anyone had their initial LEMS symptoms begin shortly after a flu/COVID/sickness? I was sick for a while and my leg weakness started maybe two weeks after I recovered. It was worse than a cold but not a particularly bad sickness and I tested neg for COVID at the time. Don’t know if it’s just a coincidence or if whatever that sickness was triggered the autoimmune reaction and I’m sure I’ll never know.
Log in to reply.