POEMS syndrome survivor: It’s OK to ask for help

I was diagnosed with Guillain-Barre disease in 2012 and chronic inflammatory demyelating polyneuropathy (CIDP) in 2013. But I learned that I actually had “POEMS” syndrome — a rare blood disorder related to multiple myeloma — at MD Anderson in January 2014. After a year and a half of being misdiagnosed by other doctors, finding out that I had a blood-based cancer brought me a strange kind of relief. By that point, my peripheral nerves were so badly damaged I could barely stand. I’d lost most of the use of my hands, too, so I was willing to try just about anything. Thankfully, I finally found the help I needed at MD Anderson. How I learned I had POEMS syndrome One symptom of POEMS syndrome (which stands for “polyneuropathy, organomegaly, endocrinopathy, monoclonal protein, skin changes”) is leg weakness. I began experiencing that in the fall of 2012, when I started having trouble walking around. Occasionally, I felt a stabbing pain in my left hip. But I didn’t go to the doctor until I could only walk my dog a few blocks one day. I was first diagnosed with Guillain-Barre disease, then later it was changed to CIDP. Despite receiving  intravenous immunoglobulin infusions from donors, I continued to get weaker. Eventually, I had to use a wheelchair, and my weight dropped from 210 to 135 pounds in just a year. Finally, my wife took me to see a different neurologist. He ordered a PET scan, which revealed a small tumor in my left hip. That’s when I came to MD Anderson. POEMS syndrome specialist gave me hope — and saved my life...

POEMS syndrome survivor: It’s OK to ask for help

I was diagnosed with Guillain-Barre disease in 2012 and chronic inflammatory demyelating polyneuropathy (CIDP) in 2013. But I learned that I actually had “POEMS” syndrome — a rare blood disorder related to multiple myeloma — at MD Anderson in January 2014. After a year and a half of being misdiagnosed by other doctors, finding out that I had a blood-based cancer brought me a strange kind of relief. By that point, my peripheral nerves were so badly damaged I could barely stand. I’d lost most of the use of my hands, too, so I was willing to try just about anything. Thankfully, I finally found the help I needed at MD Anderson. How I learned I had POEMS syndrome One symptom of POEMS syndrome (which stands for “polyneuropathy, organomegaly, endocrinopathy, monoclonal protein, skin changes”) is leg weakness. I began experiencing that in the fall of 2012, when I started having trouble walking around. Occasionally, I felt a stabbing pain in my left hip. But I didn’t go to the doctor until I could only walk my dog a few blocks one day. I was first diagnosed with Guillain-Barre disease, then later it was changed to CIDP. Despite receiving  intravenous immunoglobulin infusions from donors, I continued to get weaker. Eventually, I had to use a wheelchair, and my weight dropped from 210 to 135 pounds in just a year. Finally, my wife took me to see a different neurologist. He ordered a PET scan, which revealed a small tumor in my left hip. That’s when I came to MD Anderson. POEMS syndrome specialist gave me hope — and saved my life...