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.

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!

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.

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?

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.

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.

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.