Your Replies

  • April 3, 2007 at 7:47 am

    My Jan. bill was Gammagard 5 gm $29,233.80 which almost doubled in the last 8 months. We never had a problem getting it here before but all of a sudden they’ve had to postpone a few treatments the infusion nurse was telling me. Luckily the hospital only charges me 25% of the 20% after medicare. Going in every 6 weeks adds up. With having the Lewis-Sumner variant they cover it because steriods just don’t work. It’s a crime to be able to charge that much.

    March 26, 2007 at 8:22 am

    When I fell and broke my arm in 05 they had to put a plate put in my arm {I’m sooo gracefull, lol}, the only thing I had to do before surgery was stop taking the anti-imflammatories. Something to do with clotting. Other than that I had no problems.
    Good luck on your surgery!

    March 24, 2007 at 7:57 am

    It’s calmed down alot after my IVIg treatment, thanks everyone for the input.

    March 16, 2007 at 8:07 am

    Kitti, When I do the IVIg with the tylenol and benydryl I do dexamethasone each day before the treatment and if needed a couple of days after to help stop the menengitis. I also have pain meds availible. It’s hard to find a neuro who you’re comfortible with, keep trying! I didn’t like mine at first but after a couple visits I wouldn’t trade him for anything. I think we have to be a little forceful, asking questions and coming in prepared. Alot of times I take in information I’ve learned from this site, I figure it’s my body and I want the best there is for the disease. Don’t give up, the whole point of this forum is to help each other out. There’s nothing like good old moral support.

    March 14, 2007 at 7:06 am

    I was told by a friend who works at the bloodbank that they won’t take my blood because of the disease and the meds. Pretty much a double no-no there.

    March 9, 2007 at 6:44 am

    I’ve noticed that liquids are worse for me also. Your reply came in time for me to take the info with me today to the doc. Thanks alot!

    March 8, 2007 at 7:43 am

    I’ve been dx with the CIDP going on 5 years now, the lewis sumner part means it started on one leg first then continued on. Haven’t had any remission, the treatments have slowed it down quite a bit though. I keep track of all your opininions on the different treatments but try not to go looking for all the different symptoms, it can get too flustrating even if we’re all so different. It’s really nice to know if I do have something new and strange going on with my body that all of you are right there. Thanks for your input!
    Tomorrow’s my dr appt and I’m going in a little more clear headed.

    March 7, 2007 at 6:58 am

    Did the problem swallowing come before or after the problem with chewing? So far my jaw is fine, I have had a droopy right eye though. Alot of things I ignore, I guess alittle bit of denial but when it comes to eatting that’s serious stuff. There’s always ice cream and chocolate.

    March 6, 2007 at 6:19 pm

    How nice to know it’s not just me being difficult again,lol. All the new and exciting things that go along with the disease. I found the childhood statement on a magnet and thought it was so me. Gotta try and live each day like everything is new. Got my airline ticket to fly to Nevada in May to see my son and going to play for ten whole days!!!

    March 6, 2007 at 7:06 am

    I was a crusher operator at a gold mine before I got sick; tough, healthy as can be and thought I could do anything. Quality of life is important to me, the pain got to be horrible, between my pc and my neuro I’m doing the lyrica:75mg twice a day and have the fentanyl patch:75mcg/h changing it every 2 1/2 days.This seems to keep the pain down to a dull roar. Sometimes when I’ve over done it I’ll take a vicadan. I think that with the chronic pain it’s okay to do what you have must to try and live as full of a life as possible. As my doctors say the CIDP isn’t going to go away, we’re not abusing drugs we’re trying to carry on. It’s taken four years to get to this point, I’m not painfree but neither am I on the sofa watching life pass me by. Keep trying and hopefully they can come up with a plan to help keep the pain down.

    March 6, 2007 at 6:36 am

    I’ve found that keeping the flow of the drip slower on the IVIg can help with the flu like symptoms. Also I’ve had my doctor prescribe Dexamethasone to keep on hand when the symptoms got really bad, I’ve had to use it a couple of times and it helps with the killer headaches that can happen.
    Good luck with the treatments and welcome to the site!

    February 18, 2007 at 8:32 pm

    No regrets here but lots and lots of penquin. I started collecting them before they were “in” and much harder to find.

    February 11, 2007 at 7:08 am

    I was using the molded plastic AFOs for about three years and dealt with the problems of finding shoes to wear with them, the discomfort, etc. In August I had to be refitted because of weight lose, luckily I was fitted with a new light weight AFO that I’m extremely happy with. They’re called ToeOFF, made by allard. The web site is [url]www.allard.com[/url]. They fit into a wider selection of shoes, are easier on the feet ** I can spend more in them than the old plastic ones} and don’t have to be refitted with the weight lose-gain that goes along with steriod use. Do I sound like a commerial? lol. I’m really happy with them and my neuro is referring alot of people with the foot drop to be fitted with them. I’ve been in braces for 4 years now and like these the best. Good luck, think how nice it will be to walk around without the fear of crash and burn!

    February 8, 2007 at 6:39 am

    I live alone and can’t afford help around the house, the fatigue has been really bad so my doc put me on Provigil. I still take naps but it helps me not sleep the day away. Hopefully once you get started on the IVIg you’ll feel better. Best of luck!

    January 28, 2007 at 9:18 am

    It’s almost impossible to find a catsitter for himself, his attitude isn’t very good, I’ve depleted my supply of nieces and nephews. The only treat himself will eat is cantalope and I ‘ll bring plenty. You’re a God Send!!!