@lemsdiscussion
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DCarpenter replied to the topic Review of my first in-home infusion in the forum IVIg and Plasmapheresis 2 months ago
Hi Ashley, congratulations on the transition to home infusion! Over the past couple years, I have occasionally had supplies that were missing but the home infusion nurses typically had a personal stash. The IVIG service calls me before the shipment to ask me if I need anything. I’ve found that nurses have various levels of proficiency with…[Read more]
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DCarpenter replied to the topic Your Smartwatch & Your Health, Do You Use One? in the forum Living With LEMS 3 months, 1 week ago
I use mine religiously for medication reminders and to track my walking goals. A must have to manage my LEMS therapy
thanks Deborah
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DCarpenter replied to the topic Our next LEMS zoom meeting! in the forum LEMS Community Zoom Socials 3 months, 3 weeks ago
Can you please specify todays link?
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DCarpenter replied to the topic Our next LEMS zoom meeting! in the forum LEMS Community Zoom Socials 4 months ago
Also does anyone know a neurologist in the Charlotte NC area?
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DCarpenter replied to the topic Our next LEMS zoom meeting! in the forum LEMS Community Zoom Socials 4 months ago
I would like to discuss Firdapse vs Ruzurgi especially from those who have been on both
thanks Deborah
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DCarpenter replied to the topic Walking with LEMS (video) in the forum Living With LEMS 4 months, 3 weeks ago
How picturesque! Thanks for sharing your walk. I consider walking as a vital part of my therapy and try to do so every day. The fall weather has afforded me the opportunity unlike oppressive summer temperatures.
Deborah -
DCarpenter posted an update 5 months, 2 weeks ago
Hi all, not sure if any of you watch Fox drama “The Resident”, it is set in an academic medical center. Tonight’s episode featured the story of a woman who had been diagnosed and treated for MG for 6 years. She was still falling, staying with her parents’ poor quality of life. The physician did EMG, other tests that codified MG; however, he dug…[Read more]
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DCarpenter replied to the topic Update from my Neuro! in the forum Amifampridine (Firdapse and Ruzurgi) 5 months, 2 weeks ago
Ashley, I am thrilled to hear this wonderful news!! From modulating the IVIG, to HUG improvement to home infusion. What a blessing that you have made such impressive gains and that you are exploring options to help you!! Well done, Deborah
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DCarpenter replied to the topic Adventures in Travel with LEMS, Part 2 in the forum Living With LEMS 7 months, 2 weeks ago
I have daily pill containers by time of day—when I am out, I take those individual pill containers when I go out for the day.
I set reminder alarms on my IWatch and phone. If I am away for longer time, I take my stash of meds, and pharmacy telephone numbers for my critical meds just in case.
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DCarpenter replied to the topic Our next LEMS zoom meeting! in the forum LEMS Community Zoom Socials 7 months, 3 weeks 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 7 months, 3 weeks 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 7 months, 3 weeks 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 8 months, 2 weeks 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 8 months, 2 weeks 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 8 months, 2 weeks 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 8 months, 3 weeks 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 9 months 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 9 months 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 9 months 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 9 months 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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Wow! That’s awesome! I’ve watched that show many times, although I am currently way behind. I’ll have to check it out this week during my infusion! Thank you for sharing with us!