Dawn DeBois
Forum Replies Created
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That is great info Carmen! Thank you!
I have eliminated most bread and sugar from my diet to help with my body’s inflammation in regards to my psoriatic arthritis. My joints definitely hurt more when I’ve splurged on something sweet. I will have to take a look at those websites!
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Ben, my heart goes out to you. I’ve lost a lot of hair due to various meds but I do not have alopecia. I have a friend who has it, though, and she lost her very long thick blond locks in her mid 40’s. Hair is such a point of identity.
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So you are apart of the Multiple Autoimmune Syndrome club as well,huh. Has changing your diet helped these other autoimmune diseases as well?
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Carmen,
How many grams did you get on Monday? I find it common to have my weekend after my treatment being tired and feeling icky, and then I get the boost and benefits soon after. I get 90 grams every 4 weeks….starting on Monday’s but extending for three full days.
Be sure to let your neuro know how well you do, or don’t, respond this time. He may need to do another loading dose.
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Hi Carmen, yes, the loading dose of IVIG is a doozy as far as migraines are concerned. I remember it full well. However, the change in energy and elimination of symptoms afterwards made me a believer. Hydrating is very important. I actually get 500 mls of saline before and after each infusion.
You make a good point about “aseptic meningitis SYMPTOMS”….I do believe that the symptoms of a bad migraine do not necessarily mean you have aseptic meningitis. My neuro says they have to do a spinal tap to confirm if it is or not. I just hunker down with meds, hydration and sleep when the symptoms are bad. It is common to feel flu-ish a few days after treatment….I feel like it’s when the donor antibodies are taking over and our own antibodies are putting up their “last fight.”
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Wow Carmen, your neurologist is top notch to be so proactive and to recognize LEMS when he saw it!
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Thanks Carmen!! We will all learn together!!
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Hi Price, I’m sorry to read that they found new nodules. It’s my understanding that a patient can have LEMS up to 5 years prior to cancer being found. When someone is high risk, they usually do the scans every 6 months for those 5 years. How long ago was your LEMS diagnosis? What is the next step as far as those new nodules are concerned? Sending you positive thoughts!
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Thanks Price!
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Hi Lori! Thanks for introducing your family! I’m so happy to hear that the combination of Ruzurgi, Mestinon and now the addition of IVIG is really helping your daughter. I found the same thing. I was on 3,4-DAP (now called Ruzugi) and Mestinon when my LEMS kept progressing. The antibodies still needed to be stopped. Ruzurgi increases the amount of acetylcholine releaesed and mestinon slows down how fast the body processes it; but those two alone do not stop what’s causing LEMS- those pesky P/Q and sometimes N-Type Calcium Channel Antibodies! Many patients find they need to add immunomodulation (IVIG or plasmapheresis) or immunosuppression to slow down the antibody attack. I’m so glad to hear your daughter’s personality is coming back! The change my friends and family witnessed when I started IVIG was amazing. I call my treatment a 3-pronged approach.
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Thank you, Michael! I’m going to try my best!