Reply To: New To This In Huntsville, AL

November 19, 2013 at 10:07 pm

I wish you and your husband well. This is not an easy diagnosis. I was diagnosed in February of this year. For me I was just so happy to finally know what was wrong and that it was treatable. I didn’t even think about the long term ramifications. When I was diagnosed, I was using a four wheeled walker and was unable to get up stairs or stand from a seated position without help. I did get zingers, but I got them mainly in my feet and legs. IvIg got me back on my feet after the first day. By the end of two weeks, I was walking without the walker. Stairs and chairs were still a problem, but by April I was almost back to normal. I’ve had two small relapses, they were both taken care of by temporarily increasing the IvIg dosage. I get very few side effects from the IvIg. Some minor dizziness, slight heaviness in the chest, but no headaches, etc. that some others have reported. This diagnosis has all of us stumbling around at the beginning. I’m still not sure myself where I’ll be tomorrow. I do know that for me IvIg has done wonderful things. My dosing schedule has been very fluid from the start. My neurologist adjusts it according to how I’m feeling and what my latest EMG says about my nerves. Right now I have infusions two days every ten days. The nasty zingers are now only in my feet, they seem to get more active after an IvIg. I believe that the pain is the nerve pathways reestablishing themselves. Who knows, but it helps me deal with the pain. Good Luck…there is hope.