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Old 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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Old 11-05-2009, 01:00 AM #32
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Teeth pumpkin carvings

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Originally Posted by AnnieB3 View Post
I get my pumpkins from an organic farm. They stay nice and happy in our dark freezer room. Never had any bug problems or imploding. So keep them in a dark, cold little area - on some kind of paper or box cover - and they should stay in good shape!

Thanks, I love carving. Anyone can do that, BTW (meaning, Bring Tools With).

Annie

And there is a book out there that I got for my Mom called ""Who Knew." It has great, easy solutions to pests and all kinds of things.
Annie,
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).

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Old 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)

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Old 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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Old 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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Old 11-05-2009, 09:28 PM #36
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Post Mestinon dosage

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.



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Kendra, Annie is smart -- SCARY smart -- but, I'm praying that she is wrong. Not because I want to be right -- but, because I hate for you to have yet ANOTHER thing, diabetes, to have to deal with. (Yes, I know that it could go away when you STOP taking Prednisone, but with the dose you are taking and the REASON you are taking it -- that may be quite a while down the road.) So, I hope that this IS just too much Mesty. Because that would be so SIMPLE -- so EASY to fix -- and you wouldn't have to "live" with any nasty consequences of this "good/bad" steroid.

I don't HATE "my" MG. I get to stay at home -- "piddle" around the house -- sleep as late as I want -- go outside if it is pretty -- stay inside and do art/watch tv if it's not. But, I HATE MG for some others -- for the way it messes up young lives!! Right now I am really ANGRY at YOUR MG!!!
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Old 11-05-2009, 09:33 PM #37
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Thumbs up

Annie, I really REALLy like your pumpkin carvings. Thank you for sharing.
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Old 11-05-2009, 09:38 PM #38
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Thumbs up Coffee

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Kendra, Sometimes if my symptoms are mild and I'm going to just be at home, a strong mug of coffee can take the place of my mestinon.

Hugs,
Pat

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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Old 11-05-2009, 09:49 PM #39
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Post Pumpkins and Pesticides

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Annie, your pumpkin carvings are AWESOME -- BUT, this is all I could think about.......we grew pumpkins in our garden(s) this year. Of course we are organic (no pesticides) and after the pumpkins got really big, we picked them and put them into the barn to "cure". Didn't help -- the squash beetles STILL found them -- and ate holes -- and they rotted. Talked to some pumpkin farmers -- pumpkins just HAVE to be treated with pesticides or else they have the same problem we did. So, I'm thinking........you carved THREE of these TOXIC fruits!!!!!!!!!!! I'm cringing. And, you did say you weren't feeling well, right?? I now use borax (the washing powder) mixed with sugar (equal parts) -- and pour that around the foundation of my house to keep away ants. May try THAT next year around some pumpkins.
Thanks for the reminder about pesticides - I hate pesticides. I have grown pumpkins and other squash many many times and rarely get squash beetles or any other insect and I never use chemicals. The farmers are WRONG. Maybe if pumpkins are grown in the wrong climate then pesticides are "needed". Try another variety of pumpkin that is better adapted to the area you live. I think Native Seeds Search sells pumpkin seeds online and there are other sources for heirloom type pumpkins and not the hybrid seeds. Farmers have grown pumpkins for more years that I can even guess at and they didn't have pesticides until recently in history.

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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Old 11-05-2009, 10:27 PM #40
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Default mestinon making weakness worse???

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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