Daniel Rohrer Dan’s journey with CIDP

First post: Jul 27, 2021 Latest post: Oct 6, 2021
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How we found out Dan has CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

April 15th 2021: Dan started having lower back pain and mainly on his right side. He was preparing for his annual hiking trip and getting things ready so that he could leave middle of April. He started taking anti-inflammatory meds in hopes the lower back pain would subside. It did go away but then came back towards the end of May. When it came back…it went to his hips and then down the right leg. He went in for an MRI while in Utah, and the MRI came back clear. The pain down the legs got worse, so he decided to come home.

He drove 18 hours home, with partially numb feet and barely any energy. We are lucky he made it home otherwise…he would have been in Utah at a hospital there, for no telling how long. When he got home about June 7th, his pain in the legs kept getting worse and the numbness and tingling in his toes was worse too. He was scheduled to get a back injection on June 15th (because his docs and us thought it was stenosis or a pinched nerve) but from June 7th to June 15th, Dan had fallen four times with the last fall fracturing his ankle, by this time he had gone from a cane,to a walker, and then a wheelchair.

He got the injection, but it did nothing for him and by June 19th, my gut feeling told me that it wasn’t a pinched nerve, and to take him to the ER. That’s what we did, and he was admitted early morning on the 20th. Dan had over 15 vials of blood drawn, three MRI’s (brain, cervical, and lumbar) and other testing and then had a lumbar puncture (spinal tap).

We had an amazing on call neurologist, named Dr. Salins. She literally knew what Dan had before the spinal tap results were back( by the way this is rare and very hard to diagnose autoimmune disease.) With a CIDP diagnosis your spinal fluid has to have a certain amount of protein and normal cell count. Dan’s protein count was at 589 and the normal range is below 50!! Holy crap!! So she diagnosed him later that evening on June 21st. He had his first round of IVIG (Intravenous Immunoglobulin). When you are first diagnosed you get five days of IVIG which is called “loading dose”. Dan was in the hospital for just shy of four weeks and two of those being impatient rehab. He was released on July 14th.

Dan got some of his upper body strength back, but is still unable to walk and is in a wheelchair. The numbness and tingling in his hands and feet are still there. He’s in physical therapy and occupational therapy three days a week and also should be starting his IVIG treatments soon. That will be every three weeks over a two day period….each lasting about 6 hours. Hopefully we can get them done in our home so that he can relax in his recliner and watch movies or sleep. 🙏

Dan has a long, tough road ahead of him and will need all the positive energy, vibes, prayers, well wishes that he can get! We appreciate the love and support from our friends and family!

Love & hugs!

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