trying to get this discussion going. Just diagnosed with CIDP yesterday.. symptoms several years. Rhoda Cohen

Rhoda, I'm not sure what you want. I have/don't have CIDP depends on which neuro I'm seeing. I was also told that I had symptoms for years, but never put it together until I had an episode in July, 2012. I went thru every test, MRI, CT scan known to man/doctor. They all came back normal. Except the EMG/NC. But the last one I had was done by a neuro muscular Dr. at the Univ. of Iowa Med Center. He said I didn't have CIDP, but had a central nervous problem. And if he didn't know better, he would say I had MS. Which is what another neurologist there told me. But I don't have the lesions. I was on IVIG from last Sept to Jan. They were stopped because I wasn't responding. I take a dozen different meds. Some to treat my symptoms, some for my depression, some to help me sleep. That's about it. If there is anything else you want to know, send be a message. Lorie

my neurologist confirmed diagnosis of CIDP. I'm waiting for medicare to approve payment for infusion. I want to know about side effects and how it feels when I get it. Thanks, Rhoda

The IV sucks. I always slept during my sessions. It made me tired. The nurses said that is not a side effect of IVIG. Hydrate!! Before, during and after. Take ibuprofen before. Some take a benedryl before. Some also get fluids before. I just got the IVIG. I kept getting phlebitis so I had a power port put in in Nov. Then my treatments stopped in Jan. Now I have this lump in my chest and a big scar that I don't need.

IvIG, if it works, confirms your diagnoses. Side effects are manageable for most people. IgG is very benign; the infusion is the problem.

Eat smart, exercise and accept that CIDP is a progressive neuromuscular disease that can be treated most of the time. Side effects depend on treatment type, and again, you must accept the side effect because the full-on disease is a monster that eats you alive, while your brain still functions normally and as you watch your slow, steady decline in muscle-sensory functions.

Be proactive and read about CIDP