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Old 06-09-2014, 03:20 PM #1
Sonomagirl Sonomagirl is offline
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Originally Posted by AnnieB3 View Post
Go to the doctor, urgent care, or the ER. Some symptoms you are describing are potentially dangerous. It's time for a doctor—just go.

There's no way to tell what is going on because we aren't doctors. Even if we were, you have to be seen, examined, and have tests. Make sure they check your O2 because when the pulse goes higher with MG, it means that you might not be getting enough oxygen to your tissues.

I hope you'll be okay.

Annie
You seem to have a lot of knowledge concerning MG. I am having my first of 5 daYs of IVIG treatments starting tomorrow. Was diagnosed back in November. Now on 180 MG a day of Mestonin and 180 MG of Mestonin timespan at night.
What should I expect tomorrow with my first treatment? Any suggestions or recommendations when it comes to the possible headaches etc.? Anyone with advice please comment.
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Old 06-09-2014, 08:51 PM #2
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Drink lots and lots of water then some more the day and morning before. You may want to ask the nurse to make the rate slow for first treatment. They should check on you every 15 min during first treatment.
Mike
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AnnieB3 (06-13-2014)
Old 06-09-2014, 09:51 PM #3
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Drink lots and lots of water then some more the day and morning before. You may want to ask the nurse to make the rate slow for first treatment. They should check on you every 15 min during first treatment.
Mike
Thank you! Really did not know what to expect since this has all been set up so quickly. I will let you know how it goes. Thanks for your input!
Debbie
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Old 06-10-2014, 07:57 AM #4
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It is really not bad. My treatments take 2 hours but yours should be longer until they figure out your rate. The infusion center where I go have nice recliners, each chair has a TV, they have snacks and provide lunch depending on the time. Be sure to call about 30 minutes before you arrive so they will have the medicine ready which will save you some time. Hope all goes well.
Mike
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Old 06-10-2014, 02:22 PM #5
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It is really not bad. My treatments take 2 hours but yours should be longer until they figure out your rate. The infusion center where I go have nice recliners, each chair has a TV, they have snacks and provide lunch depending on the time. Be sure to call about 30 minutes before you arrive so they will have the medicine ready which will save you some time. Hope all goes well.
Mike
Thank you for the information. Today went very well. The facility was just as described and everyone was very nice. I learned that they actually have several people with MG that they serve. Today took around 3.30 hours total. They like to do a very slow rate the first go round. They administered 2 Tylenol and a benyadril then waited about 20 minutes before starting the IV. No side effects apparent and ready for day 2.
Thanks again!
Debbie
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Old 06-10-2014, 03:23 PM #6
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That's great news. I learned something new today. Went to see my neuro-muscular Dr and told him I had a 100% artery blocked in my leg. He said "NO IVIG FOR YOU" so now I got to decide on a by-pass. Need to discuss this with my regular neuro. I now wonder if all the IVIG's caused the blockage.
Mike
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Old 06-12-2014, 07:05 PM #7
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That's great news. I learned something new today. Went to see my neuro-muscular Dr and told him I had a 100% artery blocked in my leg. He said "NO IVIG FOR YOU" so now I got to decide on a by-pass. Need to discuss this with my regular neuro. I now wonder if all the IVIG's caused the blockage.
Mike
I had read where blood clots are not uncommon but a total blockage?? Are they going to try blood thinners?
I had a small reaction yesterday so they lowered the rate today. All seems good.
I sure hope that they can do something other then surgery. I wish you well! Keep me posted.
Debbie
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