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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.
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6 Replies
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Hi Tim
I can’t take Firdapse either and also reacted badly to IVIG.
Ive been using medical cannabis for almost 2 yrs. Now solely to treat my LEMS.
Oils and edibles didnt work well but i get really good results with a Vaporizer!
I only use it before bed (every night) or sometimes naps if necessary.
For me it was a huge game changer.
Im 56
Take care and let me know if you need coaching.
Also join the groups in facebook for support 👍🏻
Take care Brian
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Hi Tim. Our daughter was diagnosed with LEMS at age 15. She did have a flu shot a few weeks before she started exhibiting symptoms of LEMS. Her rheumatologist explained that the flu or flu shot could trigger an overactive immune response, leading to symptoms of LEMS. Of course we don’t know for sure, but I definitely saw the correlation in my daughter’s case.
There are multiple treatments available so I hope that you find one that works for you. So happy to hear pyridostygmine works so well for you. My daughter is on 70 mg firdapse, 180 mg pyridostygmine along with time release pyridostygmine at night, and rituxan infusions every six months. The rituxan has made a huge difference for her.
I’m glad you reached out. We have a great community that supports one another well.
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Thank you Brian and Lori! I will join a Facebook group too.
My neurologist is a bit surprised it seems but also pleased that the pyridostigmine is working for me. I expect Firdapse would probably be better but I don’t think it’s in the cards unless pyridostigmine stops working.
It is a very weird thing…like 99.9999% of people will never have an issue like this but then it’s randomly triggered by something. Won the lottery!
My neurologist just prescribed the XR pyridostigmine for night too, after I said that I’m happy with the pyridostigmine but still have trouble getting started in the morning. I’m glad there are multiple medications that can help with this, even if the best one is not for me.
Thanks again for the warm welcome.
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Hi Tim, sorry you’re one of us now but at least they were able to diagnose you. I had the same experience. I was super active, running, playing tennis, lost about 25 pounds and then it hit me at the age of 27. First I couldn’t go up stairs or ramps very well, then it was a struggle just to walk. I push myself hard every day. I have two kids and a full time job that is luckily remote. Hang in there and keep trying to exercise as much as you can. Don’t feel bad if you can’t though and take breaks. I am also a non smoker. But I don’t have thoughts on being sick and getting lems. Mine happened after I stopped a medication abruptly but I’m told that had nothing to do with it. Good luck finding something that will help you. I’m on firdapse, and rituxan. They work okay but still struggle to go on a long walk.
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Hi Tim,
Yes, weeks after contracting EBV (Epstein Barr Virus) is when I started displaying my LEMS symptoms. There’s many in the medical community that have published the possible linkage of virus-induced autoimmune disease. Here’s one such article:
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@theshame Hi Tim, I’m glad so many have reached out to you in our community. That’s what it’s all about. I’ve been busy and just getting to a response where so many other already have.
Some points, I’m glad you got your diagnosis and found a neurologist who was willing to work through it with you.
Having had epilepsy, you should discuss with your neurologist about how appropriate it may be for you. Seizures is a known adverse reaction. Please read the medication fact sheet on this.
Like you the summer heat was especially disabling for me too this last summer. I struggled at times just to walk to the mailbox. You know what I’m talking about. I discussed this with my neurologist and learned that heat is a great stressor to all parts of the body, respiratory and cardiac symptoms. The added stress load exacerbates the LEMS.
And finally, I too take pyridostigmine and it was my first med. It made a difference but not enough of one. I then added IVIG, then Firdapse. Depending on the effectiveness of your treatment plan, there are other options others have mentioned. It’s all worth a discussion with your neurologist as you progress in your understanding of your symptoms and how you progress. All the best. And stay with us. When you have additional questions, ask. -
@theshame Hi Tim, I’m glad so many have reached out to you in our community. That’s what it’s all about. I’ve been busy and just getting to a response where so many other already have.
Some points, I’m glad you got your diagnosis and found a neurologist who was willing to work through it with you.
Having had epilepsy, you should discuss with your neurologist about how or if Firdapse is or is not appropriate for you. Seizures is a known adverse reaction. Please read the medication fact sheet on this.
Like you the summer heat was especially disabling for me too this last summer. I struggled at times just to walk to the mailbox. You know what I’m talking about. I discussed this with my neurologist and learned that heat is a great stressor to all parts of the body, respiratory and cardiac symptoms. The added stress load exacerbates the LEMS.
And finally, I too take pyridostigmine and it was my first med. It made a difference but not enough of one. I then added IVIG, then Firdapse. Depending on the effectiveness of your treatment plan, there are other options others have mentioned. It’s all worth a discussion with your neurologist as you progress in your understanding of your symptoms and how you progress. All the best. And stay with us. When you have additional questions, ask. -
Hi Tim! I just wanted to check in and see how it’s going after your diagnosis. You mentioned your symptoms coming on after COVID-like symptoms. While what triggers these autoimmune problems is usually never fully understood, I did meet a LEMS patient recently who felt her flu shot precipitated her LEMS. So it could easily be a trigger as you describe.
Let us know how you’re progressing.
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