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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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11-04-2009, 11:25 PM | #31 | |||
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WHEW!!! Relief!! So glad you didn't get poisoned!!
Of course, bugs ARE worse here in Tennessee -- and this summer was the WORST ever with all of the rain!! We STILL have mosquitos, crickets, and wasps EVERYWHERE!! We had 18 HUGE pumpkins -- and lots of smaller ones -- all got "et" by the bugs. Gonna have to find a copy of that book! |
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11-05-2009, 01:00 AM | #32 | |||
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don't know about "anyone" ,but when I tried making a pumpkin lantern with my son for school, it was quite a disaster. in fact, this pumpkin looked like it had severe MG, and also a stroke at the same time. the only "disaster" that could compare with this, was my role as a scarecrow in the "wizard of Oz" in fourth grade. It was quite clear then, that the theatre is not the right place for me. although, I did have second thoughts about that, at some point, after I was able to "imitate" an MG patient in crisis, so well, that I managed to fool the head of anasthesiology in my hospital. (although, not the neuro, that saw me a few weeks later). alice |
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"Thanks for this!" says: | suev (11-05-2009) |
11-05-2009, 01:58 PM | #33 | ||
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Try planting marigolds around your pumpkins (or any other veg when growing). For some reason bugs HATE marigolds - so it helps as a defense...and they're really pretty too!
Don't know hwat you do once you pick 'em. Inside and raised off ground maybe with marigolds underneath?? !! (lolol) Sue |
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"Thanks for this!" says: | DesertFlower (11-05-2009) |
11-05-2009, 03:03 PM | #34 | |||
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I know that this works -- but, marigolds are one of my WORST allergies. *sigh* I can just LOOK at one and start itching and sneezing.
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11-05-2009, 03:05 PM | #35 | |||
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I meant to say "thank you", Sue. I hit the "post" button too quickly.
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11-05-2009, 09:28 PM | #36 | |||
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I am glad that you can stay at home and do what you want - I think that is the best thing one can do with MG.
I wish that I could stay at home...my doctor won't support me in applying for disability since it is his opinion that I can work and be "normal". In my real experience, I just can't work full time now with MG (I love to work and I am trying!) and my life is slowly going down hill mostly due to finances and stress. I wish I could relax...I think I could find happiness and have time to do things I still can do. Now as to Mestinon making weakness worse I have to answer not exactly but sort of in my case. I had a bad experience of taking too much Mestinon and had to have my prescription reduced. I got stiff and twitchy muscles and then started to have a hard time walking, sitting and moving in general but it was due to tight muscles. This is not exactly weakness, but I felt weak since I couldn't function. Now that I know what too much Mestinon feels like I recognize it when I need a little less. My doctor said not to change my dosage at all, but I have realized that he is wrong in this. Some days I need 90 mg/day and other days I need 120 mg/day but there is not any consistancy in how much I need since every day is so different (and sometimes I CAN go 1 or 2 weeks with a consistant dose like my doctor wants me to). I am frustrated right now in the way my doctor talks to me about my Mestinon dosage. He won't discuss the possibility of me adjusting my dose as I described above. I have to adjust the Mestinon dose or either I get weak with not enough or I get muscle twitches with too much....I have to listen to my body. Now of course if I could stay home and do what I want and only work a little I am sure I could find a dosage that works and stay with it. Please tell me about any of your experiences with adjusting your Mestinon dosage. I need some opinions so I can talk to my doctor with information. Quote:
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11-05-2009, 09:33 PM | #37 | |||
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Annie, I really REALLy like your pumpkin carvings. Thank you for sharing.
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11-05-2009, 09:38 PM | #38 | |||
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I have been experimenting with coffee and I think that one cup of coffee or tea replaces about 15 mg of Mestinon for me. I have to be careful with caffeine or I get twitchy muscles. I don't drink coffee or tea every day but only with I feel extra weak and it sure helps. Of course coffee can't replace Mestinon since there are other effects from too much coffee that I don't want, but a little coffee is great!
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11-05-2009, 09:49 PM | #39 | |||
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Pesticides are so bad for all people and noticably for us with MG. We are like the canaries in the coal mine for pesticides. I love growing food, I think next year I will try some pumpkins.
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11-05-2009, 10:27 PM | #40 | |||
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DesertFlower,
I agree with you that staying home is the ideal situation for those of us with MG. I wish that I could stay home too and symathize with your struggle with wanting to work but not feeling like it. It doesn't sound like your Dr. is very understanding of MG and how we can feel decent one day and terrible the next. Adding financial problems and stress to the mix makes it so much worse too. Is it possible to find another Dr. in your area who has more knowledge of what you are dealing with? My Pulmo called me back today and took me off of the antibiotic. She said the weakness, dizziness and headaches are all side effects of the med and she is sure that is what is going on with me. She sent me for a CBC and I should get the results of that back tomorrow. I have had the twitches you mention, mostly in my eyes. I only take 60 mg 3 x a day so don't think mine is from taking too much. I think it is just one of the side effects. As for adjusting my dosage I haven't played around with mine too much. When I first started it I was getting sick everyday so he took me off of it for 2 days and we restarted. He hasn't wanted me to go above 60 mg every 6 hours. Now that I am on the Prednisone I don't feel like I need anymore than what I take usually. One morning I felt especially weak and took 1 1/2 pills. I think that was too much for me. Good luck talking to your Dr. and I will be praying he will listen to you and your concerns. Try to take care of yourself!!! Kendra |
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"Thanks for this!" says: | DesertFlower (11-06-2009) |
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