DCarpenter

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]

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

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…

[Read more]

Yes, I am available on the 19th at 5 pm ET, thank you for organizing.  best, Deborah

Yes, I am available on the 19th at 5 pm ET, thank you for organizing! best, Deborah

Hi all, listed below is an NIH url with drugs to avoid

Table – PMC (nih.gov)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7457047/table/T1/?report=objectonly

hope helpful.  Deborah Carpenter

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]

I plan to attend.  thanks