Michele Quier
Forum Replies Created
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Just curious. What is the liquid IV you all are referring about? I have never heard of this before
Thanks
Michele -
I would love to join in. Tues afternoon at 5 works for me. I might be just a tad late but I would love to join in.
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I would love to join in. Tues afternoon at 5 works for me. I might be just a tad late but I would love to join in.
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I hopefully will be transitioning to Firdapse some time late next week? I’m currently on the last supply of Rizurgi 20mg 4x day.
Has anyone gone through this transition? I am hoping that it is a smooth transition. I do know that I will loose my strength for sure if I have to go cold turkey and I am terrified.
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Good Morning.
I also have my good and bad days for walking. The longer I stand or the longer I walk to worse I get. I do venture out to the house but am no table to walk far without pain in lower back, hips and thighs. then comes the burning sensation in my legs and massive weakness. I cant help but think that I also have a lumbar disc issue along with the LEMS diagnosis. I take Rizurgi but I am never 100 %. Is this normal? -
I will be on vacation this week but if timing works out I can take my laptop along and join in on the Zoom conference. the wifi at the campground can be alittle spotty but I would still like to try and join in .
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My nuerologist hasnt mention anything about IVIG being an option yet. I will have to ask him at my next checkup. I would love “weeks” of feeling pretty good instead of a few hours here and there each week. thanks for the suggestion.
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Great Question Ashley
I do wonder that same thing! I seem to feel my best about 1 or 2 hours after I get up in the morning until shortly after supper time. Some days are better than others though. I am never consistent in how I feel from day to day. I basically have the same routine from day to day as I gave up just about everything I was involved in about 3 years ago when all this started for me. I guess I will never have a normal life ever again? Some days are good and other days are bad. This to me is puzzling as I cant help but think something else is going on with me but LEMS is what the dr insists is it. I have been on Ruzugi for a total of 8 months now. I was hoping to get back to somewhat of a normal life but no luck for me. Thankfully I work from home as there is no way that I could possibly work outside the home. The more I stand and the more I walk the worse I get. When I am feeling my best I am still only at about 70% of what I normally was. Its a struggle. I try not to use a cane but when we go on vacation I need to take a wheelchair as I wont be able to enjoy myself if I didnt. I have read things online and it seems like when people go on meds that they feel almost normal? Thats what confuses me. So…in answer to your question. I definately feel better about an hour or two after I wake up but never 100% mobile and each day is different no matter what I do.
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I am 53 yrs old and it took 3 yrs to be diagnosed with LEMS. It has been a learning curve for me but I still think there is something else wrong in addition to the LEMS. I am on meds now that has taken away the heavy feeling and given me some mobility back but I am still quite limited in what I can do. Steps are the worst and the longer I stand or walk the worse I get. Does everyone else feel this way? curious
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I am from Danielsville, PA.
I have just been diagnosed with LEMS after having the symptoms going on 3 yrs.
I will be getting a CT of lungs and abdomen on Monday but my Neurologist says he would be surprised if cancer shows up as underlying cause since I had it so long? Fingers crossed. I am currently trying to get Ruzurgi approved by insurance. Still dont know if I can even afford it but still waiting for Panther RX Rare Pharmacy to get back to me.
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Application has been submitted and is currently under review. I was curious of the transition from Rizurgi to Firdapse if there were any issues. If anyone else is going through this? Does Firdapse work as well, better or worse then Rizurgi? Just looking for experiences so I can get an understanding on what to expect.
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Thank you. I know that people look at me crazy when I say there are good days and bad days. I am coping. I just had a follow up apt with neurologist and he basically said to give the meds time and he did not offer any other options. He did ask if I had anything in mind. I guess that made me think that he isnt too informed on what could be tried? I guess I have to keep looking and researching on my own.