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DCarpenter replied to the topic Our next LEMS zoom meeting! in the forum LEMS Community Zoom Socials 5 days, 10 hours ago
Yes I plan to attend and would like to discuss side effects from LEMS drug therapies.
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DCarpenter replied to the topic Medical Marijuana – Yes or No? in the forum Living With LEMS 1 week, 2 days ago
I asked my neurologist and primary care physician about using CBD and neither thought it was a good idea because of the lack of research on the effects.
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DCarpenter replied to the topic Adventures in Travel with LEMS, Part 1 in the forum Living With LEMS 1 week, 2 days ago
I have not flown since my diagnosis, and aside from COVID concerns in the context of my immune suppressed state, the unpredictability of travel is of most concern. I have travelled extensively around the world, and have experienced travel delays, missed flights, having to scurry to another gate, rerouted and canceled flights, on the fly changes,…[Read more]
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DCarpenter replied to the topic Sleep Beautiful Sleep, Where Is It? in the forum General Questions and Topics 1 month ago
I asked several doctors about Using CBD and all were not in favor— good to hear that you found helpful-
I never get a good nights rest and wondered if it were the disease or meds. I also have so many dreams every night which awakened me—have never had this before LEMS
breathing exercises help, but never a sure thing
Deborah
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DCarpenter replied to the topic Getting Ready to Travel Again in the forum Living With LEMS 1 month ago
I applaud your efforts to travel—seems overwhelming to me but I know I would take advantage of carts to get from gate to gate, I know the CLT airport—a daunting trek.. I also remain concerned about Covid variant surge—esp if on immune suppression meds.
eager to hear about the program plans, and your successful travels
deborah
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DCarpenter replied to the topic Combating Heat Intolerance With LEMS in the forum Living With LEMS 1 month ago
I absolutely struggle with the heat, which exacerbates my weakness and fatigue. I tried to walk in heat and didn’t last a few minutes. I try to get out early, but tough to choreograph when meds kick in with walking early. I’ve thought about the neck fan but see mixed reviews about their effectiveness and placement— any feedback on brands? I have…[Read more]
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DCarpenter replied to the topic IVIG home infusion question in the forum Introductions 1 month, 1 week ago
Thanks for your helpful insight Joyce, especially since you have first hand experience in home care. Nurse # 2 came this past weekend and I gave her a test and asked her to please use it. She adamantly refused. I did call nurses’ supervisor, same company. She said that CDC didn’t require it and it was complex operationally—false positives who wi…[Read more]
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DCarpenter replied to the topic IVIG home infusion question in the forum Introductions 1 month, 2 weeks ago
thank you…reinforces that my concern is legit. Today I offered another home nurse a rapid test when she arrived, and she vehemently declined. We both wore masks.
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DCarpenter started the topic IVIG home infusion question in the forum Introductions 1 month, 2 weeks ago
Hi all, I have had monthly infusions for over a year. Recently the long time nurse who comes to my home tested positive for COVID (had symptoms) right after she left me (within 7 hrs) so she was obviously contagious when she was with me. We both mask all the time, and she does not stay in the room with me full time. I reviewed the CDC, home nu…[Read more]
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DCarpenter replied to the topic The Covid Vaccine and IVIG? in the forum In the News 1 month, 2 weeks ago
I had my COVID vaccine booster the day after IVIG, and was ill for over a week, conjunctivitis, full body rash, body pain, vomiting, diarrhea, was horrible. I had asked my doctor if it were OK to have them near and he said yes—HE WAS WRONG. I was on steroids for rash and conjunctivitis for over a week.
My hematologist said never have it near…[Read more]
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DCarpenter replied to the topic Getting a "Divorce" From Your Neurologist in the forum General Questions and Topics 1 month, 2 weeks ago
Hi Price, I could have written your narrative. I have complained about hip/thigh pain since my diagnosis, and my neurologist dismisses my complaint, and esp. since the Left is worse than the Right. Suggests it is orthopedic related, but I tell him I did not have this until LEMS. I had a reaction to Mestinon? or Firdapse? 30 min after taking t…[Read more]
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DCarpenter replied to the topic Where Are You On Your COVID-19 Vaccine Booster? in the forum Coronavirus (COVID-19) and LEMS 1 month, 2 weeks ago
I have had the Pfizer vaccinations with two boosters, My neurologist is now suggesting my taking the Evusheld injection at least one month following my last booster, because I am on IVIG immunosuppression. Has anyone taken this or discussed it with their doctors? thanks Deborah
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DCarpenter replied to the topic Statin Drugs and LEMS, Be Cautious in the forum General Questions and Topics 1 month, 2 weeks ago
Hi Price, my cardiologist wants me to go on statins, how long were you on the drug before your LEMS symptoms were exacerbated? Are you currently on one now? See below the options she is posing. Also has anyone had trouble with medically induced stress testing drugs? see below
Cholesterol medications
- –Atorvastatin or rosuvastatin; though a…
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DCarpenter replied to the topic LEMS zoom meetings are returning! in the forum LEMS Community Zoom Socials 1 month, 2 weeks ago
Yes, I am available on the 19th at 5 pm ET, thank you for organizing. best, Deborah
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DCarpenter replied to the topic LEMS zoom meetings are returning! in the forum LEMS Community Zoom Socials 1 month, 2 weeks ago
Yes, I am available on the 19th at 5 pm ET, thank you for organizing! best, Deborah
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DCarpenter replied to the topic Medications to avoid in LEMS (and Myasthenia) in the forum General Questions and Topics 4 months ago
Hi all, listed below is an NIH url with drugs to avoid
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7457047/table/T1/?report=objectonly
hope helpful. Deborah Carpenter
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DCarpenter replied to the topic How Long To Get Your LEMS Diagnosis? in the forum General Questions and Topics 6 months, 2 weeks ago
I was fortunate to be diagnosed within 4 months. Initially, I was seen by a Washington DC neurologist, who did an array of tests trying to determine a diagnosis. Before she could finalize the diagnosis, I was unable to swallow, and she referred me immediately to Johns Hopkins in Baltimore, where I was hospitalized and prescribed IVIG, F…[Read more]
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DCarpenter replied to the topic LEMS Meet & Greet next week! in the forum General Questions and Topics 1 year ago
I plan to attend. thanks
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DCarpenter became a registered member 1 year, 4 months ago
Hey DCarpenter!
Welcome to the Lambert-Eaton News forums @lemsdiscussion !
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 would love to hear more about your experience with LEMS! What year were you diagnosed?
Please take a…[Read more]