Emilys_mom
Your Replies
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February 23, 2012 at 9:05 pm
If you were receiving IVIG before you lost your insurance than your IVIG manufacturer may have a program in place to keep you on IVIG for little or no cost. My daughter is enrolled in Gammaguard’s program.
You may also qualify for state assistance – like Medicaid. Or you can call the Foundation & ask them for a list of resources.
Unfortunately, there isn’t any at home treatment for CIDP that I know of.
Kelly
February 22, 2012 at 9:49 pmMy step-grandma has CMV which caused her to get fibromyalgia & chronic fatigue syndrome.
She has to take meds to control her CMV…her dr does regular titers.
Kelly
February 22, 2012 at 9:39 pmGOOD LUCK!
That’s great news! Fingers crossed for you!
Kelly
February 22, 2012 at 9:38 pmNGG – Good to see you back! Emily has decided she’s going to join orchestra next year and play the violin. I could not be more proud of her. (I was secretly hoping she would play the bass or cello though)
Gary – It’s good to see you drop by. I hope things are well with you!
Kelly
February 15, 2012 at 4:52 amHere’s what I’m thinking…
I noticed a HUGE improvement with Emily right away. She went from barely being able to walk to running & jumping…in less than 24 hours after her 1st IVIG. I think you notice the first improvements more because you’ve been so weak for so long.
If you are noticing you are feeling weaker 15 days after your infusion then I would suggest trying to get the 30 grams but every 10 days. The trick is to get more IVIG before you start to notice any symptoms. The attack is already happening on your nerves when you notice the symptoms. If you can stop the attacks all together then your body can start to repair itself.
Honestly, I would tweak the dose & schedule before trying steroids.
Kelly
February 15, 2012 at 4:44 amI have checked back a few times but I do not like this new forum. I find it hard on the eyes. I have a large computer monitor & the all white page is just too much for me. I feel like the new forum looks…generic.
I also emailed the Foundation & asked about private messages. I had a phone number stored that I would like to get back. I haven’t heard from them.
For now, I will check when I have time but I’m not going to be an active participant.
Kelly
