Reply To: Newly Diagnosed

I live in Minnesota and also have CIDP. I started with a neurologist at the Noran Neurological Clinic (Minneapolis). My neurologist did a great job at diagnosing my CIDP. My EMG and NCS showed moderate demyelination and my spinal tap was positive for the protein too. But all other tests were normal. She said since all my other tests ruled out other diseases such as MS, she diagnosed me with CIDP because of the results from my EMG, NCS and Spinal Tap. Also my symptoms came on about 10 days after I got the H1N1 vaccine so she also thought maybe the vaccine played a part in the CIDP. But once I was diagnosed I decided to start and see a specialist and looked at the U of M. It was a wait to get in and see the CIDP specialist at the UofM but once I got in he is a great doctor. I currently get IVIG at home every 21 to 28 days as I need it. I did try SubQ infusions at home administered by myself. I didn’t like them. I had to stick myself twice a week and each time I had to use 3 needles and they hurt to stick them into my tummy or thigh. It took almost as long to give the dose SQ as it took to get my IV dose. But I was constantly getting my infusion. So I tried it for a summer and went back to IV. I would revisit SQ again in the future if for some reason my veins went or I could get my dose down so I didn’t need so much of the drug. But for now, I like my nurse taking care of everything. I just have to sit there. The good thing about SQ is I could do it anytime and anywhere. I took it to work one day and stuck myself and wore it during my work day. I also liked to do it late at night after everyone was asleep. I didn’t have to give up a whole day anymore. IVIG has helped me immensely. I can tell that it helps because as I get close to my infusion date I start to get more annoying symptoms and feel worse. Then I get the IVIG and I feel better and symptoms subside for a few weeks.