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myathanis gravis
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cwille posted:
well, what is that old saying , when it rains it pours, just found out this week that i now am the proud owner of a new disease, lol it is called myathanis gravis. I will be starting treatment soon , something called ivig, i have looked it up , and it doesn't look like it is fun, oh well. If i keep this up i might just be on all the community boards, i just went on the lupus board to see if anyone knows of a community board for myathanis gravis. As i have said before as long as i can keep laughing, i will be all right, god is in my corner and my asthma hasn't been doing to bad lately, ( i better not mention that , might jinx myself) oh well, hope everybody is doing fine, god bless , and see you all around the communities , lol .

cwille
Reply
 
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amcate responded:
I'm sorry to hear of this. I just reviewed the disease in a reference book I have. It says the nerve impulse is good, the release of the neurotransmitter ACh is good, but the receptor on the muscle for the neurotransmitter doesn't function well due to antibodies, which blocks ACh reception and the muscle doesn't contract. Is "ivig" IV immunoglobulin? Anyway, sorry you have that as well. I agree, humor is very helpful...there is another support group website called "daily strength" which might have a myasthenia gravis board on it....and even if it doesn't right now, maybe it will in the future.
 
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amcate responded:
I double checked, and indeed the daily strength site does have a myasthenia gravis community board and it looks active to me. Their website is www.dailystrength.org .
 
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cwille replied to amcate's response:
thanks, i knew i could count on you all, lol .

cwille
 
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amcate replied to cwille's response:
Thanks for your question, cwille. It's been difficult for me to get a good differential diagnosis done, and you brought up another possible line of investigation for why the asthma meds help me, but not as much as my allergist thinks they should.
 
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cwille replied to amcate's response:
sorry i took so long to reply, but i went to the dailystrength web site, and it is fantastic, i got a lot of questions answered, thank you so much, you don't know how much i appreciate it. Actually you probably do since we are all on some kind of web site or another, it is real nice to be able to talk to people who are going or have gone through the same things you are going through, that is why i love the site. I always recommend it to people i know, anyway once again thank you and i hope you find all the answers you are looking for. God bless.

cwille
 
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amcate replied to cwille's response:
I'm glad I could help, cwille. I've not been here for a few weeks, so am late responding myself....so don't worry. It is very helpful to be able to talk to people who have gone through similar stuff and who understand. Most community boards on that site are very supportive, though there are a few that are more debate oriented (health care reform threads, etc). The myasthenia gravis group looks very active to me, so glad you've found some answers.


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