I will talk to my doc as soon as I get back (Dec 6th)! I think it would be great to have IV IG more often (and a lot less each time as well).....Maybe that's why I'm so freaking thirsty after each round of treatment.......
I will also demand the chest port. My hema thinks I need one and what you said made a lot of sense - I'll need these veins sooner of later
!!!!
How are you doing? Are the renovations over with? Are you excited about the holidays? Do you have family coming over? How is your daughter?
I've finally finished decorating my home! Finally! My mom should be by shortly to help me do all of the "last minute" decorations!!!!
Happy Holidays!
Erin
Quote:
Originally Posted by MissyGirl
Sorry, Erin, but I think your neuro needs an education. He's not doing you ANY favors by waiting 3-4 months and then doing a huge load of ivig. It is HELL on the kidneys and you run a risk of doing some damage with repeated huge multi-day dosages. MUCH better to do smaller doses once a month or even more often as needed. Your neuro seems to not be very proactive. He's waiting for a big problem and then goes with a big "solution." Consequently, you are left with big "feel good" then "feel really badly" days, and the stress those bring. You need to have treatment that tries to give you a fairly constant level of function--that is the goal. Have a talk with the doctor or find a new one!
The chest port is absolutely the way to go because your veins are being ruined by the constant poking, not to mention the big time scarring of repeated picc lines. Keeping venous access is sooooooo very important as we're looking at 50 or years more of life, and with the other health problems that may or may not come with life other than MG. If our veins are toast and we're in our 60's or 70's and need treatment urgently and they can't access anything...that's a huge problem. Again, talk to your neuro or find one who understands IVIG treatment with MG.
Hope you're feeling good for the holiday today.
Happy Thanksgiving,
Missy
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