DCarpenter

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]

I use mine religiously for medication reminders and to track my walking goals. A must have to manage my LEMS therapy

thanks Deborah

Can you please specify todays link?

Also does anyone know a neurologist in the Charlotte NC area?

I would like to discuss Firdapse vs Ruzurgi especially from those who have been on both

thanks Deborah

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

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

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.

Yes I plan to attend and would like to discuss side effects from LEMS drug therapies.

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.

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]

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

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

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]

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]

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.

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]

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]