Liane Martin
Forum Replies Created
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Mestinon definitely causes twitching and gastric issues, but if you take electrolytes and eat while taking it, your body can adjust pretty quickly, at least for mist of us. Some never can. Prednisone cause the shakiness, not Mestinon. IVIG Gave me tons of side effects, and made me terribly sick, but I stuck to it, as it seemed to be helping about 2 weeks a month. Now it seems that my low dosage of Prednisone is the only thing helping. Mestinon helps with swallowing, that is about it, but I notice, if I don’t take my full dosage, 90 mg 4x a day…I cannot swallow. I just got all my antibodies retested for the 3 rd time in 1 1/2 years since I have been diagnosed, and have a positive AChR modulating antibody finally, so no longer Seronegative. That gives more options, so my dr is going to try Ultamiris first…we will see, I hope it works!
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I saw my dr on Monday. I am now AChR modulating receptor positive. He is very excited for me to start Ultomirus. I have filled out paperwork, and have gotten my first Meningitis vaccine appointment next Thursday. IVIG seems to have little or no effect for me any more. It was working great for a year, but now, not much. Prednisone seems to be the only thing that kind of works now. I probably won’t start until July, maybe August, so crossing my fingers it will be the one for me….the last few months have been very hard.
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My dr just recommended it to me, as I am no longer Seronegative. So, hoping my insurance company approves
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It was my choice to get a puppy in May of 2021. It has not been easy. There are days when I just cannot keep up with her energy. Then there are days when she has helped me move more, get out of my head more, and just plain enjoy life more. My husband did not help much at first, but he really loves her, and steps up more, especially on my flare days. I also couldn’t do it without a dog walker. She doesn’t actually walk her, but comes over with her dogs to socialize and play. It has been beyond helpful. My puppy was terrified of walks, so I haven’t walked her much yet. Once the weather breaks, and she is over a year old, I will be going back to trying to walk her for short stints on my good days. It would definitely say, even though it has been hard work, all in all, I am glad to have her.
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Yes, the rise in Covid cases, and the continuing arrogance of antivaxxers and people refusing to mask up, causes way more stress and anxiety than is needed.
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I definitely experience pain. Mostly in my hips when I walk a lot or move around a lot. And yes, I have cramping as well. I take an electrolyte pill every day, and try to stay hydrated, but still have cramping.
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I agree…thank you for that
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This is why we cannot get rid of Covid, the uninformed think they know better. If you are immunocompromised the vaccinologists, the epidemiologists, the scientists have facts, and figures to show that the vaccines lessen the chances of death from Covid. No one ever said vaccines are the end all or be all. Why have we as a society decided education means nothing? 🙄🙄🙄