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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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09-25-2009, 01:43 AM | #11 | ||
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Hey Joanmarie, so sorry to hear about this! I know it doesnt feel good to have to go back on Mestinon again, especially when you havent taken it in a while. I hope that it works for you this time round, and you'll feel better soon!
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09-25-2009, 08:27 AM | #12 | ||
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I have always been really sensitive to most meds too - - and have to careful whenever I start something new since I'm never sure if I will have a reaction.
When I was given a 'test' dose of Mestinon the first time, I felt like I had drunk way too much wine! It took about a 1/2 hour to get rid of that feeling, but then I felt great! Initially they said it was too bad I couldn't take Mestinon! I argued to try a lower dose ... and it has worked for three months now!! I literally have two bottles -- one with 60 mg pills that I have quartered and one with 60mg that I have halved. I 'know' when I need which dose by how my body feels. And it's a bit of a pain to have to take the meds so frequently, but I have had NO side effects (and no 'wine' brain!). For me, I feel like my body doesn't tolerate 'normal' doses of any drug - - I mean I only take one ADvil for a close to migrain headache! Maybe this would work for you,,,,hope so. Sue |
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"Thanks for this!" says: | DesertFlower (09-26-2009) |
09-25-2009, 12:08 PM | #13 | ||
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The Dr. put me on 60mg 4 times a day, {I used to take 120} but I did like Sue and broke it in half, it worked and well to be honest today I took a full tablet and it worked even better I forgot what it was like to look at something and not lose focus! I can tell when it is wearing off because my vision starts going bad and fast. The cramping is not so bad either I was so afraid it was going to be like before but since I am on such a low dose it is good
Thank you all again for the support! |
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09-25-2009, 08:34 PM | #14 | |||
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Can your thymus grow back???
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Cricket . |
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09-25-2009, 09:24 PM | #15 | ||
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Stephanie,
Yes, it can from what I have read. Might take many years, but if some cells were left behind, it is possible. I have never read the per cenatages - - maybe some one here knows. Sue |
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09-25-2009, 10:54 PM | #16 | |||
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Hey Joan,
I'm so glad to hear that you're tolerating the mestinon well this time, and that it's helping with your symptoms! That's great news! Nicky |
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09-26-2009, 04:32 PM | #17 | |||
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Oh Joanmarie! I am sooooo happy for you!
What fabulous news! I have a sneaking suspicion that REMISSION is right around the corner for you! Love, Erin Quote:
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09-26-2009, 05:14 PM | #18 | ||
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I've heard a lot of people say yes, but I seriously doubt it... thymomas are very prone to recurrence though. If Thymus cells are left behind from a thymectomy, and you have cancer cells (thymoma) it is quite likely that they will grow back.
The thymus actually degrades to just fatty tissue (normally) shortly after puberty. We "lucky" few keep the thymus around longer than it is needed. I don't think it is actual Thymus tissue regrowing. Of course, I could be very wrong... this is just my belief based on my understanding of the Thymus, thymomas, etc. |
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09-28-2009, 10:19 AM | #19 | ||
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Hey Joan Marie,
I am so happy for you! I too am so sensitive to meds like you are and it was very brave of you to give it another try. Good for you. That constant double vision effects our lives in so many ways. It's very scary when it happens while driving...I keep a bottle in both of our cars and purse just to be sure. On a different note...I had a pharmasists tell me to only cut a few of them in half at any one time, because they can loose their potency once they're cut. This is true with some other meds as well. Just thought I'd put that out there. Hugs, Pat |
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"Thanks for this!" says: | suev (09-28-2009) |
09-28-2009, 10:32 AM | #20 | ||
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Hi Joan,
I am so glad that you decided to go ahead and try the mestinon again and that it is working for you! |
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