Take a look at
a magazine called ‘IG Living’. It’s sponsored by many manufacturers and you can view current and back issues on-line.
It is chock full of info about ‘access’ and support in getting IVIG. I have had a rare occasion to contact the magazine staff about IVIG problems and they were wonderful and very responsive. Others I know who get IVIG have been helped by them as well.
It also lists all the manufacturers on back reference pages and lots of support groups as well. Many of these manufacturers have world-wide offices and the IGLiving folks mite be able to steer you to the right key people. Worth a try for sure, no?
As for brands of IVIG? Well some folks have certain IgA and IgM intolerances and these should be tested for before receiving any particular brand. Sometimes the minute content differences make a BIG difference to any given person.
I hope this helps and I hope you get to read and learn more about IVIG. Often, w/some insurance plans…IVIG can be specially approved if steroids are shown not to work. That is something you and your doctors are going to have to wrestle with. Keep on fighting! Then nap when you get too tired-recharge and start again!
Take a look at
Web up the ‘electronic textbook of dermatology’ from Stamford University. Pay attention to the ‘diabetic neuropathy’ aspects after reading the introductions. It really explains how your skin which is part of the ‘vascular system’ and is an autonomic system works. IF an area’s nerves are damaged, they simply cannot send the proper signals to sweat, or they can send the wrong signal to sweat when there is no need.
I learned this the hard way, as I did not, could not sweat at all for over a year after my onset. Once on IVIG I can sweat on occasions [usually rite after] and randomly.
IF you don’t sweat at all, just be sure to keep your feet moistened/lotioned! Dry feet can get ‘cracks’ called fissures that can lead to infections and other issues none of us here want to experience!
When you get CIDP…your body says REST! KEEP STILL! You try to work thru it all. You cannot pretend you don’t have IT! You will have to learn to ‘pace yourself’ to keep from getting overtired and having to pay the price. It comes with the territory. It does NOT mean, however it’s the end of the world, you just have to play with how you deal with the world. I hope this helps.