Your Replies

  • January 23, 2007 at 8:15 am

    Will have to find Himself the cat some little mittens and cap, he won’t go out in the winter.

    January 23, 2007 at 8:11 am

    I’m coming off the solumedrol iv treatments, couldn’t handle the way it made me feel. I was either ready to tear someone’s head off or ready to cry, I can’t take anti depressants so life was horrible. Also my bone density kept getting worse and I was taking the max on suppliments. Going back to the IVIg, every 4 weeks with cellcept daily. Steriods are cheap but the side effects for long term use just wasn’t worth it for me.

    January 23, 2007 at 8:01 am

    I also had problems with Neurontin and my dr switch me to Lyrica. Have been on it for a couple of months. The only problem I had with the Lyrica was some balance problems but once we got the dose down a bit all else has been fine. It all comes down to working with your dr to find the meds that work best for you. Good luck!

    January 22, 2007 at 7:49 am

    I thank you and himself thanks you, it’s about time he was a productive member of my house hold. We’re dealing with about 6-8 inches of snow here so I’ve got the pratice. I promise to keep it on the road. My mom will be so proud!

    January 21, 2007 at 6:41 am

    Oh please, please, please let me have a job! In my former life as a hard rock miner I learned how to run really great heavy equipment : dosers, loaders and the like. No one needs to know you can’t run heavy euipment on drugs but then in your nieghborhood maybe it would be a good thing?

    January 9, 2007 at 7:35 am

    It was great getting more infromation on Lewis-Sumner. I had thought it was the same as CIDP, just another name. I’m learning the computer as I go along so really rely on all of you to guide me and you guide me so well:D . I’ve so far had just the tripping, numbness and pain but as of late I’ve gotten what I think of as noodle leg, my right leg gets where I can’t control it. Doesn’t last very long but is irrating, any clue if this is going to prodress? I’m waiting for a call back from my doc but his nurse can be slow. I’d be thankful for any more info.

    December 31, 2006 at 7:50 am

    [IMG]JPG006_6[/IMG] When your only child calls to say he’s coming up for a visit

    December 7, 2006 at 7:02 am

    The blood work is very important, have to make sure everything is functioning all right. On me it’s checking my kidneys, Tcells and liver. I hate needles with a passion but you gotta do what you gotta do.
    My doctor said that there’s a chance that the cellcept might be enough to keep the symptoms as bay, that sometimes it might take awhile. Otherwise we may have to continue with a combination of drugs. Is any one making do with just the cellcept?

    December 6, 2006 at 6:34 am

    I also take two doses of a 1000 mg of cellcept a day and had a problem with the nausea, the doctor can give you something for that. I was told to take it on an empty stomach, I believe it’s one of those have to kind of things.
    Cellcept is usually given as an anti-rejection drug for people who have had a kidney transplant, so basicly slows the immune system down. After trying alot of different combination of drugs I take the cellcept with either smaller treatments of the IVIg, or solumedrol in an iv form. The cellcept has made a bigger difference in slower the CIDP down in me. After a time the nausea has gotten less.

    December 5, 2006 at 7:53 am

    I get my IVIg at the infusion lab through the hospital under part d of Medacare. As I’m lower imcome, have no second insurance and living alone the hospital writes off 75% of my 20%. We have a deal where I just pay 50 dollars a month,{probably for the rest of my life,lol}. I’m back off the steriods thank God, and will go in once a month.

    November 6, 2006 at 7:54 am

    Hi Angel2ndclass, I dated a boy from Rosalia when I was in high school, a long, long time ago. Tell your sister they’re developing along the Northwest section of the Spokane River in the downtown area, putting in Shops and Condos, {the Kendall Yards Project} and that Deaconess is my hospital of choice, they know me well, lol.
    I guess I’m a problem child, I have a rough time with alot of the drugs and am very stubborn. I didn’t want to do steriods anymore, I had been of and on them for years. Didn’t want to do them long term anymore, so keep at the IVIg trying to find a brand I could tolerate. Ended up on steriods anyway. It’s hard to find the lesser of the evils when you get nasty side effects from most of the drugs and treatments that are available. A few days of sick can be worth it if there’s some time you feel well after.

    November 5, 2006 at 6:45 am

    I’ve had the Aseptic Meningitis four different times and was told it was from not being able to tolorate the brand of IVIg. It got to the point of keeping Dexamethasone by my bed incase it hit, the onset was fast and furious, and would keep me down for days. It’s not a pretty sight. Gammar PIV was the only one I could take and when that stopped working back to the steriods I went. Funny how alot of people would freak out not realizing that I wasn’t going to give the meningitis to them. Anyway, my point was I never considered that my brain fuzzyness could have stemmed from those treatments. This forum has given me a lot of insight and never fails to give me think to think about, fuzzy brain and all.

    November 1, 2006 at 5:45 am

    [FONT=”Comic Sans MS”][/FONT]
    Just went in for new AFOs, as the others didn’t fit from the weight lost. They’ve come out with some pretty styling new ones. I’m so happy!!! Can spend more time on my feet without the fear of falling down, no bruises, and they actually fit in a normal pair of shoes. I went for a walk in the park to see the leaves turning colors and didn’t even care how cold it was!:D It’s the simple things!

    October 31, 2006 at 5:52 pm

    Spokane, WA, looking at a high of 35 degrees and a low of 16. I’m freezing and so jealous of all those nice warm temps.

    October 30, 2006 at 9:19 am

    I use that excuse whenever I can, lol. Haven’t there been other cases where the defense blamed it on the steriods?