Your Replies

  • May 29, 2009 at 9:21 am

    My doctor suggested any sort of high top tennis shoe for working in the yard when the braces were difficult to wear. Ifind they work pretty well

    May 26, 2009 at 9:41 am

    I have a “swedish AFO” brand name TOEOFF. Sounds like the ones badmommy is talking about. I love mine. Not to hot in the summer and fit in a wide selection of shoes {a girl thing}. After some of the others I’ve tried these are great.

    October 31, 2008 at 9:34 am

    Been out of touch for awhile but wanted to put my two cents in :] I’ve had the extreme headache, nausea after every IVIg treatment I had until I started the dexamethazone. Didn’t matter which brand I used. I only use it about three days for one day of treatment, keep my flow at 100 or below and the difference is fantastic. I’ve only noticed a slight case of grumpiness from the dex and a problem sleeping on the third day but the side effects don’t last long and are worth it when considering the way I feel without it. Guess each person has to decide the results, each of us so different when it comes to the side effects of the meds we take.

    March 13, 2008 at 5:24 pm

    I wasn’t sure about organ donating so I had it taken off my ID, then I went ahead and donated my body to science. Figured if I could help them find anything more about CIDP, great. Have something positive done with the remains and not have to worry about giving some hurting someone else.

    February 18, 2008 at 7:21 am

    My heart felt sympathy on the passing of your mom. I hope you can find strength knowing she’s in a better place. God bless you, Pattie

    February 18, 2008 at 7:12 am

    I’m scheduled in every three months, if I have a problem either he calls me or they squeeze me in. After talking to the nurses at the infusion lab I’m lucky. There isn’t enough neuros in Spokane {we have a very high MS rate up here}, they say the one I see is not only one of the best for CIDP here but he has one of the best records for returning calls , seeing patients, etc. Plus I really like him, he talks to you like a person and doesn’t make you feel like you’re being rushed through.

    January 23, 2008 at 9:20 am

    I have Lewis-Sumner variant of CIDP,I have been on 1000mg of Cellcept twice daily for over 3 years and 60gram of IVIg treatment every 5 weeks for over a year now. I have rountine blood work done, and my doctors have been keeping an eye on me, so far no side effects from the cellcept.After trying different treatments for the last 5 plus years this has gotten the best results for me. The side effects look scarey on paperwork for most drugs, luckily I’ve had none of them.

    January 19, 2008 at 7:42 am

    I have Medacare but after it’s gone through their billing I’m still looking at $700 to $800 every 5 weeks as my out of pocket. The local hospital had me fill out an application on my income and out going expenses, using that they write off a portion of my bill and I make payments on the outstanding balance. I’ll probably will be making payments for the rest of my life but otherwise I’d never be able to afford the treatments. Hope this helps.

    January 12, 2008 at 8:43 am

    I’m one of the unlucky ones who almost always had a reaction to the IVIg. I do 4 mg of steriods on the day of the infusion and for one to two days after; it seems to keep the side effects down to a dull roar. So when you are weaned off the steriods and only doing the IVIg you might want to keep this in mind. I hope you don’t need this info and continue with no problems.

    December 28, 2007 at 1:11 pm

    That sounds like the stuff my nurse was telling me about. My pharmacy didn’t have any info on it but are going to check into for me. I have a terrible thing with needles {okay, I’m a wuzz} but wanted to to see if it was cost effective for me and easier for me to tolerate. I don’t see the neuro until next month but figured on talking to him about it too. I did find a site but it didn’t go into cost, that’s a biggie for me. If I find anything good I’ll pass the word along.

    October 31, 2007 at 7:38 am

    Miami Girl,
    One of the positive things of me getting the CIDP is I’ve learned to stand up for myself when it comes to the Doctors. If something doesn’t work or the side effects make me miserible I’m not taking it. Luckily I’ve found Doctors who are welling to listen and work with me. I’ve had some very trying experiences in the ER, trying to talk to some MD who thinks they’re God when they have no clue on the disease or treatments. It’s made me more self-assured and more vocal if nothing else. Got to look for anything positive.

    October 31, 2007 at 7:25 am

    Too bad AFOs aren’t like a car that you can test drive before you buy. I bet each of us has at least one pair in the closet we can’t wear. I’d at least ask if there was any sort of selection before you’re fitted.

    October 31, 2007 at 7:18 am

    I almost always have a reaction to the IVIg without premeds and it can strike up to 12 or more hours after. I do the benadryl, tylenol {sp} and also do Dexamethasone 4 mg before each treatment. It makes a big difference.

    October 31, 2007 at 7:12 am

    I also have Lewis Sumner variant, my neuro told me that the solu-medrol IV treatments {steriods} usually didn’t work as well as the IVIg on that form of CIDP. I’ve done both and it’s true in my case. I’ve an appointment with him so can ask if he knows where there is some kind of info to back that up. If he can come up with anything I’ll let you know.

    October 30, 2007 at 7:56 am

    Miami Girl,
    Talk about alot of people not knowing about CIDP, I went to my pc yesterday morning and she was out sick, since it was the first appointment of the day they didn’t get time to call me to reschedule. As it was just a med check appointment I saw another doc in the office. Spent 3/4 of the time explaining to him what CIDP was. Me trying to educate an MD on the finer points of CIDP, lol. At least he was truly interested.