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Old 09-08-2012, 11:02 AM #1
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Default New Experience
Yesterday I was getting my IVIG and met a lady who was getting hers also. She also has MG. It was sorta nice to chat in person with someone who has experienced the same things. We had a long chat about treatments and various problems we have had. It really makes you feel that you are not alone. One of the nurses set up the meeting because they aren’t allowed to disclose other patient’s diseases. If you ever get the chance to do this I highly recommend it.
Mike
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Anacrusis (09-08-2012)
Old 09-08-2012, 11:14 AM #2
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I also met a man while we we're both having IVIG that has MG, him and I are 2 of the 3 people in our town that have MG, it's so rare that it is nice to meet someone who has been thought the same issues and understands what you are talking about.

he is a ex paramedic and is making sure that our local EMR people and stars teams understand MG and what needs to be done in case of crisis.
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Old 09-08-2012, 05:02 PM #3
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I too have met several people with mg while getting ivig. It was great to talk face to face with someone who faces the same problems I do at times and we also able to share websites and other info. Bless the good nurses!
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Old 09-08-2012, 10:17 PM #4
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The infusion center I go to now has no other Mg ,e but the center i went to before did.
But they seperated us on purpose, I don't know why?

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Old 09-08-2012, 11:01 PM #5
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Originally Posted by scrubbs View Post
The infusion center I go to now has no other Mg ,e but the center i went to before did.
But they seperated us on purpose, I don't know why?

scrubbs
Can I ask where you get your infusions? I live in Las Vegas, as well. I'm currently waiting on insurance approval for the IVIg, but it's going to be provided through Accredo.
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Old 09-11-2012, 01:28 PM #6
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Originally Posted by pingpongman View Post
Yesterday I was getting my IVIG and met a lady who was getting hers also. She also has MG. It was sorta nice to chat in person with someone who has experienced the same things. We had a long chat about treatments and various problems we have had. It really makes you feel that you are not alone. One of the nurses set up the meeting because they aren’t allowed to disclose other patient’s diseases. If you ever get the chance to do this I highly recommend it.
Mike
I wrote to the MG foundation of California and found a local MG support group that meets about 15 minutes away from here once a month or so. They sent me lots of very useful information on every aspect of MG, meds, lifestyle adjustments, coping strategies, etc. It will be nice to attend a few meetings and meet a some fellow MG'ers.
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Old 09-11-2012, 07:08 PM #7
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I’m jealous!! I don’t have one close by. I had one about 30 minutes away in Charlotte but disbanded due to lack of members.
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