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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 2 days, 2 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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Price Wooldridge posted a new activity comment 1 week ago
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!
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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, 1 day 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, 2 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, 2 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, 2 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 posted a new activity comment 1 week, 5 days ago
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! -
Price Wooldridge replied to the topic Do your LEMS symptoms vary over time? in the forum Living With LEMS 1 week, 5 days 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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Price Wooldridge posted a new activity comment 2 weeks, 1 day ago
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! -
Price Wooldridge started the topic Do your LEMS symptoms vary over time? in the forum Living With LEMS 2 weeks, 2 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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Price Wooldridge started the topic LEMS Zoom Social Coming Up Wedesday, March 8th in the forum LEMS Community Zoom Socials 2 weeks, 5 days ago
Just a reminder to join us for our monthly March Zoom call for all LEMS patients, caregivers and family.
March is Autoimmune Awareness Month. Let’s talk about the autoimmune trigger for LEMS. And we’ll talk about vitamin supplements and their worth in the treatment plan.
Join us Wednesday, March 8, 5 PM Eastern. A LINK will be posted here day…[Read more] -
Price Wooldridge replied to the topic Are Allergies and Autoimmune Disorders Connected? in the forum General Questions and Topics 2 weeks, 5 days ago
David, I think latex is frequently an offender because I see latex warnings fairly frequently around the clinics, especially relating to procedure gloves.
My IVIG overpatches originally caused me blistering and redness. When I discussed this with the infusion nurses they switched me to another call and IV3000 which seems to have lessened the…[Read more] -
Price Wooldridge started the topic Are Allergies and Autoimmune Disorders Connected? in the forum General Questions and Topics 3 weeks, 2 days ago
From the time I was a youngster, I remember being taken to the doctor for allergies. I recall the doctor telling my mother to use pillows with me which were made from synthetic materials and not bird down. I’ve been plagued with allergies to so many things all my life.
Just this week I’ve had to switch bands on my Apple Watch because the met…[Read more]
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Price Wooldridge replied to the topic Life with a Mediport in the forum IVIg and Plasmapheresis 4 weeks, 1 day ago
Y Petrie thanks for the link to see one of these. When you first mentioned it, I went out and Googled to see it.
I’ve had my Bard Power Port for years, and it ONLY get’s used for my infusions. And I prefer it that way because of the sterile, precautionary measures that must be done to access it. No blood draws, no ER nurses trying to use…[Read more] -
Price Wooldridge replied to the topic Seronegative LEMS in the forum Diagnosed- What now? 4 weeks, 1 day ago
I just was retested by a new neurologist, even though I have been on IVIG antibodies therapy for years. My results just came back negative. Obviously, this makes me very uncomfortable, because I have my original Mayo Clinic lab results from my diagnosis, which were positive.
I’m concerned becausese I don’t know what my new neurologist is going…[Read more] -
Price Wooldridge started the topic Rare Mental Health Struggles Aren't So Rare in the forum Living With LEMS 1 month ago
“The experience I have had is that once you start talking about mental health struggles, you realize that actually, you’re part of quite a big club.”
– Prince HarryPrince Harry of the English Royal family has been all over the media with the release of his new book, SPARE. I’ve not purchased it and probably won’t, but that was a perceptiv…[Read more]
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Price Wooldridge posted a new activity comment 1 month ago
@pataalli555 Hi Patricia! Welcome to the LEMS Forums as a caregiver. Please read Using Our Forums when you have the opportunity.
I actually have family way back who lived in Farmersville! Holsombake is the name I believe.
Anyway, we’re glad to have you. Be sure and check out Lori Dunham’s columns too as she is also a caregiver.
Let me know if…[Read more] -
Price Wooldridge replied to the topic Seronegative LEMS in the forum Diagnosed- What now? 1 month ago
Interesting Bernie. If I recall you did not respond to IVIG antibodies therapy either. Please correct me if I’m remembering incorrectly. Just wondering out loud, would the lack of P/Q or N antibodies account for this. That might be q question I’d ask my neurologist. Thanks for responding!
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Price Wooldridge replied to the topic Seronegative LEMS in the forum Diagnosed- What now? 1 month ago
Yes, thanks for this report. It’s interesting that these reported symptoms are all high up. Myasthenia Gravis is generally considered a top down disorder and LEMS the opposite, a bottom up disorder. This illustrates how commonly held assumptions are not always correct.
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Price Wooldridge started the topic What Is Your New Normal? in the forum Living With LEMS 1 month, 1 week ago
Mysterious symptoms happen and then suddenly you learn you have Lambert-Eaton Myasthenic Syndrome (LEMS). Of course, you’ve never heard of it, and your future is suddenly unknown.
What is this? I know it’s affecting me in significant ways, but what’s the long-term going to look like? These thoughts spin through your head. With knowl…[Read more]
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Thank you Price. Happy to be here.