Eleanore Monty
Forum Replies Created
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Hi there – this is Ellie, caregiver to Wes. And yes, I am interested! Thank you for the invite. I await further instructions.
God bless you for doing this. -
Thank you and God bless!
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Please post the link
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Hi there! This is Ellie. It is my hubby who has LEMS. He is currently being weaned from prednisone (thankfully) and has been off of imuran for several months. He has IVIG’s every 2 weeks. His neurologist is recommending cellcept. Wes has a siezure disorder, introduced after 2nd COVID inoculation, so they are very careful regarding drugs. He has had so much going on in his body over the last 2 1/2 years I almost hesitate to comment, so please put my thoughts in perspective.
Because Wes had throat neck cancer prior to LEMS diagnoses (another very long story). Before they make any changes, they want another opinion from Moffit Center in Tampa, since his blood results went a little wonky a while back. They seem to be settling done now. We just keep looking up. God is with us. -
Thank you for your caring response. Wes was diagnosed in Nov 2021, but lems treatment did not actually begin until Feb 2022. He was under the care of a sleep specialist at the time who identified his apnea and hypersomnia. He is on CPAP and meds.
His neurologist is aware. My question was basically to see if it is actually a symptom of lems.
I appreciate the dialogue! -
Hi – this is Ellie. I am married to Wes who has been in treatment for LEMS since 2/15. Wes’ sleep  problem is his inability to stay awake. He has sleep apnea and prior to his lems discovery,  he was also  diagnosed with idiopathic hypersomnia.  He takes meds which may need to change, but does anyone else struggle with wanting to sleep almost all the time?
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A heartfelt thank you! This is so very helpful.
I am bringing myself quickly up to speed  – it’s quite something to educate a team of  physicians why have never dealt with LEMS!
We believe that Wes has had the disease for 1 1/2 years , but it was masked in throat cancer diagnosis, treatment, a grand mal seizure after COVID shots, encephalitis, sepsis, bleeding ulcer etc etc etc. When he was in hospital for 19 weeks Oct – Dec, I requested an autoimmune test which revealed the voltage gate . . . however we were never given results. Consequently when he was ambulanced into hospital on 2/14 – his heart rate and blood pressure, oxygen so low he was a noodle, placed in ICU again. This is when they began treating LEMS with 5 days of IVIG, prednisone and imuran. He just had another IVIG yesterday. He will receive 1 treatment per month as a precaution. Â He is improving and we are cautiously optimistic.
He is cancer free but will receive quarterly scopes and scans. Onward and upward.
I have other questions but will post them in the proper format.
Again a sincere thank you!!!
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Please send the link
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What is the link please
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This is so interesting. Thank you!
Can you kindly include the list of antibiotics or tell me where I can find them?
My husband, recently diagnosed with LEMS, has a prescription for amoxicillin waiting at the pharmacy. It is a prevention for teeth cleaning to avoid bacteria entering his lungs due to aspiration issues.Our neurologist also mentioned concern with anesthesia.