Yes! I can never know when the muscles scream “enough is enough” but they let me know if I overdo it and tighten up for any number of days. If I walk further or not often than they like, I am sure to know! There are times they tighten up, other times I have excessive weakness.
I too experience vision problems at various times. I have dx of dry eyes and droopy eyelids and do have double vision and blurred vision especially when I take my walks but, not always. Any one or more symptoms can occur anytime. Can be most annoying. My optometrist finds nothing unusual for these symptoms to occur. I am comforted knowi…[Read more]
My arm rash is getting better, headache pretty much gone, still bouts of nausea and the chills but better. However my doctor is very concerned about the second dose, if I should just cancel my appt. for that or not.
I had my first dose of Moderna on Feb 10th with expected mild side effects. Yesterday, 11 days later, my arm at injection site started to itch and turned into a rash and swollen. A fiery itch it is, had a bad night also with HA and nausea. My primary care physician wants me in his office this afternoon for eval and to rule out shingles or a…[Read more]
Good morning Price, just want to reply to your post re shoulder weakness and pain. I hadn’t given any thought to it being related to the LEMS but for a few months now I have had the same thing going on in especially my left shoulder thinking it was a rotator cuff injury but couldn’t think how that could have happened. Excrutiating pain at times…[Read more]
I started on 3,4 Dap in 2014 on a trial basis at OHSU and then started on Firdapse in 2019 when that became available. I continue to experience the numbness and tingling around the mouth and have vision events such as blurriness and trouble focusing at times but rather than LEMS progressing for me, the Firdapse has greatly improved my quality of…[Read more]
I’m a sucker for baked goods, one of the biggest G-F offenders. The good news, there are other substitutes which work just as well. Here we have a wonderful gluten-free bakery that makes delicious pastries and such. Sadly, because of Covid, their little business has been scaled back. I love their cinnamon rolls!
Thanks for the welcome! Seems most of us aren’t to be content with the LEMS, we have to have more than one disease or complication to deal with! I am not celiac but am somewhat intolerant of gluten and have to be careful of how much I get in my diet. Yesterday seemed to be an over the top day gluten wise and had a bad night with stomach pain an…[Read more]
Happy Holidays! 🎄
If you really think gluten is causing you gut issues, maybe you should discuss with your doctor. There are lots of GF options, and some stores mark GF items on their labels. I’m very strict of course, but perhaps some diet modifications would be helpful. Just a thought. I’m working on my diet now and moving off dairy. Whe…[Read more]
I trialed IVIG in 2015 or 2016 and didn’t realize any benefit from it but would try it again so will see what my neurologist thinks about it at my next appt. I just turned 80 recently I have to keep in mind I am dealing with the aging process also. I feel I am managing the LEMS and aging both quite well. For a few years recently I suffered wi…[Read more]
How long were you able to trial IVIG for previously? It can take a couple of months for you to feel the full benefits of it. Happy late birthday! I’m sorry to hear you are having issues with your allergies and migraines- Do you take anything for either? Allegra works wonders for me
I was diagnosed with autoimmune LEMS in 1914 after several visits to Neurologists and other medical professionals from 2011 on. I started stumbling and falling in 2011 and was given the diagnosis of spinal stenosis, but as my LEMS symptoms continued to progress, my condition seemed to remain a puzzle. I wanted a diagnosis even if there se…[Read more]
Welcome to the Lambert-Eaton News forums Dorothy!
My co-moderator @pricewool and I are so happy you have joined our community!
We have members from all over the world with LEMS and have a ton of information to offer! I was diagnosed about a year after you and also have autoimmune LEMs. I’m curious to hear if you have any other…[Read more]
Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.