Reply To: Plasma exchange time to improvement?

Jim and GH,

Thanks for the information. As an update I saw little or no improvement from the 4-5 PE treatments. I am now wondering if the CIDP diagnosis was valid (based upon the elevated protein level from a spinal tap). Strike one was the two weeks of solumedrol (1000 mg/day); strike two was the IVIG (3 treatments), and strike three was the PE exchange. The final straw was trying to get the follow-on treatment. Originally the neurologist said yes (was out of the country), and I verified that the order could be sent to the hospital and they would do it. After multiple phone calls over 4 days I was then told that the hematologist would have to order, who I had seen the previous wednesday and said the neurologist would decide. Of course the hematologist only worked a few hours on Monday, then was out until Wednesday and my permacath dressing was over a week overdue relative to the prescribed dressing change. I elevated my concern on a decision, then phoned the quality department who said they would get back to me the next day. That never happened, and I ended up calling again a few days later but could only leave a message. I finally ended up going to the hospital for a dressing change only, and was told by the head nurse that they would find out what to do and let me know. She received the same answer that the hematologist needed to be consulted, who was out until Wednesday. The answer finally came back that they decided no more PE, and then later that I should have the permacath removed. Their level of care leaves a lot to be desired, as after my previous visit a month ago I was told the next available appointment was June, so they put me down for that. So much for Beaumont Royal Oak.

So I now have an appointment next week at Wayne State (center of excellence), to hopefully confirm or deny the diagnosis. My question is what else might have the elevated protein level and cause progressive leg weakness, tremors, etc. A previous diagnosis was possible ALS, based upon a reflex test and not much else. I am still making it to work with the help of a rollator, but I’m not sure how much longer I can make it the distance to my desk. I think if an effective treatment isn’t found soon I will be forced to retire. Also I live in a two story house, where all the bedrooms and showers are on the 2nd floor. Hopefully we can get a stair lift.

Thanks for your help.