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Price Wooldridge started the topic Tracking Your Meds On Apple Watch, Do You Need Reminding? in the forum Living With LEMS 3 days, 22 hours ago
Over the past year I’ve tried several things to use as memory aids to take my meds on time. You may or may not be like me, but I have several medications that need to be taken on schedule several times a day. Firdapse for my LEMS is one of them.
A couple of weeks ago I was setting up a new face on my Apple Watch. They’re quite customizable and…[Read more]
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edward smith became a registered member 1 week, 1 day ago
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Price Wooldridge replied to the topic Do your LEMS symptoms vary over time? in the forum Living With LEMS 1 week, 3 days ago
Do you have any reasons you’ve thought of that cause these big swings? Me it could be a missed dose, the last week of my IVIG cycle, an overactive day, or excessive heat. If you think of what may be causing yours, let us know.
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Price Wooldridge started the topic B12 and LEMS, Do You Take Supplements? in the forum General Questions and Topics 1 week, 3 days ago
A fellow LEMS friend recently recommended taking a B12 vitamin supplement, telling me she felt it was helping her and her LEMS.
According to the label on a bottle I purchased, B12 “helps reduce fatigue” and “Supports brain cell function.” There is a disclaimer added on the labeling that the FDA has not tested or evaluated the actual validit…[Read more]
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Price Wooldridge replied to the topic Hello, just diagnosed. in the forum Introductions 1 week, 4 days ago
@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…[Read more] -
Price Wooldridge replied to the topic Hello, just diagnosed. in the forum Introductions 1 week, 4 days ago
@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…[Read more] -
RDT replied to the topic Do your LEMS symptoms vary over time? in the forum Living With LEMS 1 week, 4 days ago
Definitely #4 depending on activity. Some days I can walk and others I can’t if I’ve done any activity.
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RDT replied to the topic Hello, just diagnosed. in the forum Introductions 1 week, 4 days ago
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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Amber replied to the topic Hello, just diagnosed. in the forum Introductions 1 week, 5 days ago
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…[Read more]
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Tim replied to the topic Hello, just diagnosed. in the forum Introductions 1 week, 5 days ago
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…[Read more]
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Lori Dunham replied to the topic Hello, just diagnosed. in the forum Introductions 1 week, 5 days ago
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…[Read more]
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RDT replied to the topic Seronegative LEMS in the forum Diagnosed- What now? 1 week, 5 days ago
Initially tested positive for both types (P/Q & N Type), retested a year later only P/Q type & tested again both positive again. Just got retested last week and now the Mayo autoimmune encephalopathy panel removed the P/Q & N Type from their panel??? So who knows?? Regular EMGs are negatives but SFEMG are always positive.
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Brian Herres replied to the topic Hello, just diagnosed. in the forum Introductions 1 week, 5 days ago
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…[Read more]
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Tim started the topic Hello, just diagnosed. in the forum Introductions 2 weeks ago
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…[Read more]
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Price Wooldridge replied to the topic Do your LEMS symptoms vary over time? in the forum Living With LEMS 2 weeks ago
Bernie I am probably a 3 too. Sometimes it’s kind of explainable, but often a mystery. That’s LEMS.
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Tim became a registered member 2 weeks ago
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Hi Tim! Welcome to the LEMS Forum! We’re happy to have you.
When you have time, please read Using Our Forums.
Also, take a moment to browse the Topic areas for those that interest you.
And again, welcome!-
Thank you Price. Happy to be here.
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Bernie replied to the topic Do your LEMS symptoms vary over time? in the forum Living With LEMS 2 weeks, 2 days ago
I’d say #3, some days are better than others. I wish I could determine some cause and effect for which I get, that would be great.
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Price Wooldridge started the topic Do your LEMS symptoms vary over time? in the forum Living With LEMS 2 weeks, 3 days ago
How do you feel your LEMS symptoms vary day to day?
I often can feel quite a difference in my LEMS symptoms. One day I may have more hip weakness than another. My LEMS voice appears and disappears, often within hours.
Tell us how your LEMS symptoms vary.
Poll (please answer in comments)
1. Symptoms feel relatively stable day to…[Read more]
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Dale became a registered member 2 weeks, 4 days ago
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Hi Dale! Welcome to the LEMS Forum on BioNews. And thank you for joining us on our monthly Zoom Social.
When you have time look over How To Use the Forum, browse the topic areas for your specific interests.
Again, welcome!
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Kevin Schaefer replied to the topic LEMS Zoom Social Coming Up Wedesday, March 8th in the forum LEMS Community Zoom Socials 2 weeks, 4 days ago
Hey y’all, here’s the meeting link. Feel free to join even if you can only come for part of the time. See you then at 5:00 pm EST!
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Hi Edward! We welcome you to the LEMS forum. When you have the opportunity, please read Using Our Forums, then browse the topic areas for your interests. We have all the latest news here too. I noticed you have been diagnosed since 2002, so you must have many experiences to draw on. Again, welcome!