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Hi, my name is Dorothy Dempsey.
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 seemed to be no solution so my primary care provider sent me to neurology at OHSU in Oregon where it was found I had LEMS and was prescribed 3-4 Dap and then Firdapse in 2019. I also have Collagenous Colitis, another autoimmune disease. I have been managing to do daily activities of living without aid of cane, walker or wheelchair but unable to walk but short distances. Just the past couple of weeks, I have been using a cane to go for a short walk, approx. 1/2 mile to see if I can benefit from that. I do garden and find that enjoyable and helpful for my mobility.
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7 Replies
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Hey @dordem
Thanks for joining us and sharing your story! Has your doctor mentioned trialing IVIG to see if you can get some improvement? Many of us are on it here and it has allowed us to live a somewhat “normal” life with LEMS.
I also love to garden! Look forward to getting to know you.
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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.
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Nice to meet you Dorothy and glad you are here.
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Welcome Dorothy! Glad you are with us. Like you and many LEMS patients I know, we have more than one autoimmune issue. Mine is DH, dermatitis herpetiformis, a celiac disorder. I can relate to the age gracefully plan. I hope you will continue to try and be as active as you can. Glad to have you here!
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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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@dordem
Agreed! It can get frustrating to have several diseases to keep an eye on, but it seems like most of us do sadly. I’m sorry you had a rough night because of the gluten, luckily I don’t have much of an intolerance to it. My main issue when it comes to digestion is acid reflux which has been acting up lately so I understand how annoying GI issues can be. Hope you are feeling well enough to get your chores done! Happy Holidays!
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HI Dorothy
Welcome to the group. Getting outside & moving is so important for so many reasons. Nature /gardening is very calming. I took a walk in my gardens today and noticed that I have several blooming hellbores now. sometimes called the Christmas rose. The sun was out so I got some vitamin D and the sunlight helps the melatonin for good sleep at night. Since there are so many sugar goodies around now, a good diet is difficult but it is so hard to eat just one!
Merry Christmas to All
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