@morgan1028
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Morgan replied to the topic Transitioning from IVIG to Rituxan in the forum IVIg and Plasmapheresis 2 weeks, 4 days ago
Yes, thankfully! It has only been two days on the increase but I think I am a little better. When I increased prednisone the first time in 2021 it worked fairly quickly.
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Morgan replied to the topic Stress, Food, and LEMS in the forum Living With LEMS 2 weeks, 5 days ago
Hi @pricewool,
Great topic! I decided to kick excess sugar about 2 months ago. I always heard about how toxic sugar is but I had no idea! My one vice is coffee. I didn’t realize how much I was consuming in my creamer because I bought the “natural, healthier one.” Then, I started reading the sugar content on dressings, sauces, condiments, etc……[Read more]
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Morgan replied to the topic Transitioning from IVIG to Rituxan in the forum IVIg and Plasmapheresis 2 weeks, 5 days ago
Yes, my neurologist increased the prednisone to 25mg for 2 weeks then to 20mg. I was on 15mg before the increase but started out on 50mg in August 2021. I was on 50mg when I started IVIG and continued to do well while slowly weening until the last couple of infusions.
I’m sorry to hear you may be having some of the same issues I am.
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Morgan replied to the topic Transitioning from IVIG to Rituxan in the forum IVIg and Plasmapheresis 2 weeks, 6 days ago
I had a televisit with my neurologist yesterday and if my labs turn out to be okay I will start Rituxan. He first mentioned CellCept but I had questions so he suggested Rituxan. Thankfully, I had read Lori’s column so I was a little familiar with it!
The IVIG infusions are not as effective as they were in the beginning since my…[Read more]
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Morgan changed their profile picture 6 months ago
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Morgan replied to the topic An antibody test specifically for paraneoplastic LEMS? in the forum The Big C 7 months, 1 week ago
Thank you, @ashleygregory757, for this forum post.
I asked my neuro to run this lab and thankfully it came back negative! I am P/Q type antibody positive.
Yes, I think this is a good test to repeat in the future. Correct me if I’m wrong but from what I have read SOX 1 is to detect SCLC (Small Cell Lung Cancer)? If so, I would still get a PET or…[Read more]
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Morgan replied to the topic LEMS and Immunosuppression in the forum Immunosuppression 7 months, 1 week ago
Hi @pricewool and @ashleygregory757!
Those articles and forums are great! Thank you! Yes, it can be overwhelming.
The first IVIG treatments at home went really well. The loading dose was 4 days, then it will be 2 days every 4 weeks. The brand I received is Gammagard Liquid. I was thankful I didn’t have any side effects. Price, I read you didn’t…[Read more]
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Morgan replied to the topic LEMS and Immunosuppression in the forum Immunosuppression 7 months, 1 week ago
I am currently taking 50mg of Prednisone and I started IVIG October 1-4. My Neuro is hoping to wean me off Prednisone if I have success with IVIG. The medications for LEMS I can’t take because I have epilepsy.
I’m newly diagnosed with LEMS but I was first diagnosed with MG. I was put on Mestinon but it didn’t help. I started having breathing…[Read more]
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Morgan posted a new activity comment 7 months, 2 weeks ago
Yes! I was shocked how rare it is in people our age! I had never heard of LEMS before my diagnosis.
I was first diagnosed with MG because I’m anti-titin and anti-striated muscle antibody positive. That’s the only labs indicating possible MG. My symptoms are not the typical MG symptoms so even that was difficult to diagnose. Finally a…[Read more] -
Morgan's profile was updated 7 months, 3 weeks ago
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Morgan posted a new activity comment 7 months, 3 weeks ago
Thank you, @pricewool. I appreciate the invite.
This forum is very helpful and informative since LEMS is so rare and most doctors have never heard of it.
I’m so thankful to have come across the SOX-1 antibody test topic @ashleygregory757 started. I asked my neurologist to draw that lab and I’m waiting on the results.
At the end of January…[Read more]
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Hey @morgan1028
I’m so glad you found us and are finding us useful!! 🙂
I’m sorry your diagnosis took that long and you had to go through that, but glad to hear you are getting some answers now! A lot of us here are on IVIG and there are many topics about it! If you have any questions, feel free to reach out to @pricewool or I! Let us know when…[Read more] -
Also, we’re about the same age! I was born in 90! I know only a few of us with LEMS that are so young!
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Yes! I was shocked how rare it is in people our age! I had never heard of LEMS before my diagnosis.
I was first diagnosed with MG because I’m anti-titin and anti-striated muscle antibody positive. That’s the only labs indicating possible MG. My symptoms are not the typical MG symptoms so even that was difficult to diagnose. Finally a…[Read more]
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Morgan became a registered member 7 months, 3 weeks ago
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Thank you, @pricewool. I appreciate the invite.
This forum is very helpful and informative since LEMS is so rare and most doctors have never heard of it.
I’m so thankful to have come across the SOX-1 antibody test topic @ashleygregory757 started. I asked my neurologist to draw that lab and I’m waiting on the results.
At the end of January…[Read more]
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Hey @morgan1028
I’m so glad you found us and are finding us useful!! 🙂
I’m sorry your diagnosis took that long and you had to go through that, but glad to hear you are getting some answers now! A lot of us here are on IVIG and there are many topics about it! If you have any questions, feel free to reach out to @pricewool or I! Let us know when…[Read more] -
Also, we’re about the same age! I was born in 90! I know only a few of us with LEMS that are so young!
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Yes! I was shocked how rare it is in people our age! I had never heard of LEMS before my diagnosis.
I was first diagnosed with MG because I’m anti-titin and anti-striated muscle antibody positive. That’s the only labs indicating possible MG. My symptoms are not the typical MG symptoms so even that was difficult to diagnose. Finally a…[Read more]
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