Dorothy Dempsey
Forum Replies Created
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Hi again Price, you mentioned morning being the best time for you for more aggressive activities, mornings are my best time also to accomplish things. Then my mobility and energy are at the best. If I am going to walk, it has to be morning and before the day starts to warm up. Heat just melts my muscles. I really struggle with hot weather. If I wait to walk later in the day after doing other chores, I am too weak and potential for falling is greater.
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My LEMS changes throughout the day. I never know what might be the best time to tackle any task or project! And my eyes change at any time from good clear eyesight to blurry and poor focus. My Ptosis(dropping right eyelid) varies day to day and hour to hour also. Oh my, I’m falling apart! One thing I’ve learned these many years is to become flexible and take each change in stride, not let them get me down. What else can we do? I forge ahead!
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Like my day today, working on my flower beds and pulling grass and weeds around my garden edges with the sun shining bright!
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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.
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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 knowing that others are blessed with some of the things I’ve been dealing with. Makes me think I likely am not making these things up!
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I was diagnosed with LEMS in 2014.
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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 anything else. I have read there have been others with that week’s delayed reaction to the moderna vaccine. Has anyone else experienced this weird phenomanen?
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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 especially if reaching back. Then my right shoulder started acting up but not as bad. Interesting to find out it could be the LEMS. So what comes next? Yesterday I had my first shot of Moderna , am experiencing chills and headache but not serious and the sore, painful arm. Just wanted to share my experience with the shoulder thing!!
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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 life. I was ready for a wheelchair and was using a cane before the 3,4Dap and was falling but my ambulation and mobility have improved to where I can now take short walks of 1/2 Mile or more a few days a week. I use a cane still for my walks for support. I still have weakness in my trunk area and legs and potential for falling but there is so much improvement with the drug. I take seven 10 mg tabs/day, 2 hrs. apart, the first one not helping much but from then on, I get going with more energy and strength for the day. The firdapse has certainly made a big difference in my activities of daily living.I call Firdapse ” my go pill”.
Because of the LEMS, I deal with constipation often for a good period of
time, does anyone out there have that same problem and do you have any suggestions as to what has helped you?
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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.
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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 and indigestion and nausea this morning which is an indicator of too much gluten and/or a migraine aura. But I don’t let these things get the best of me. Was just outside raking leaves after a few wind gusts last night but got chased back in as it started to rain. Sun coming out again so must get back to my chores. Keep well and have a great holiday!
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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 with migraines for approx. 3 months at a time twice a year but this past July was my last episode and hoping that somehow there will be no more. They seem to be related to spring and fall allergies which I have several of.