Reply To: Recently diagnosed with CIDP

November 8, 2014 at 12:37 pm

Your case seems similar to mine at the outset, although I am much older. I went from a normal, healthy adult to a wheelchair in about a month, and kept going down. After IvIg treatments I was moved from the acute hospital to a rehab hospital, prematurely as it turned out. I continued to decline, even after a second loading dose of IvIg. I was then back in the acute hospital and was switched to plasma exchange (PE). In a few weeks I got back to rehab and it has been uphill since then.

My advice is:

Get a neurologist who is experienced in treating acquired peripheral neuropathy.
Try alternative treatments if necessary to find the best one for you.
Be patient. There is no quick solution to this disorder. I spent 18 weeks in the hospital, the last eight in rehab units, then did six months of outpatient therapy. It was many more months before I reached nearly full recovery.

No other patient’s experience will predict the outcome of your case, however. There is a lot of variation. You must try to remain optimistic and work toward the best recovery you are able to achieve.