jastg

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  • January 15, 2018 at 12:09 pm

    Some do better then others with IVIG. I was always wiped out day of infusion and slept the rest of the day. I slept on and off during my whole infusion time. I had severe joint inflammation, lower back and hamstring muscle stiffness, migraines on and off as soon as I started IVIG. I never had a migraine in my life. I took Tylenol day of treatment and on and off between treatments, along with copious amounts of liquids everyday as close to a gallon as I can get. I split between Crystal Light and PowerAde Zero. I usually drink a powerade zero three times a week.

    January 15, 2018 at 6:31 am

    It’s Polyneuropathy meaning both sides of the body like a mirror effect. However in my case flare ups are never equally distributed on both sides of my body. I would say 75% of my flare ups start on my left but I may have flare ups that affect both legs and my left arm and my right arm is fine. I also have much more major nerve damage on my left side of my body then my right according to EMG’s. It’s never the same.
    When it was getting close to IVIG time the little things like sock and glove, twitches, hand, knee and lower leg tremors are always both sides of my body starting same exact times.
    Talk to your Neuro and ask him to explain your EMG results and which nerves are damaged on which sides of your body to give you a better idea. Remember CIDP is different for everyone. We all share some common symptoms but we also have some that are unique to each of us.

    December 9, 2017 at 11:19 am

    I’m early in the game and have had seven infusions and go every other week for a four hour treatment. Lately I have been getting up with lower back pain and stiffness that runs down my backside and into the back of my legs. I have to take a muscle relaxer and use a walker to get around for an hour or two then it goes away and I’m okay for the day. Hang in there try a muscle relaxer and a anxiety medication.

    December 9, 2017 at 11:08 am

    It does help, thank you. I think my wife and I might be expecting too much so early in treatment. We are also concerned about returning to work and the stress level going up. We all know how CIDP loves stress. That’s a big concern and my work is aware of my illness.