Life with Neuropathy

Hi, my name is John. A nd I have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy ).  How did you feel when you got your Handicap Sticker for your license plate? Or maybe you chose a placard for your rear-view mirror. I got the latter because you can move it easily from vehicle to vehicle.  Honestly, I never thought the day would come.  Although I do remember when I was initially diagnosed with "peripheral neuopathy" -- the idiopathic kind. After a difficult nerve conduction test I was given the terrible news. "You'll just get worse and worse until you need a cane, a walker, and eventually a wheelchair... And there's nothing you can do to prevent it."   No encouragement. No hope. That was a very dark day.  But then I found a neurologist who confirmed after a spinal tap that I had CIDP. And  I learned that there were some options. Which is good. Full disclosure: I'm still waiting to try some of those options but I least I have a sparkle of hope tha

Hi, my name is John and I have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). Thanks for stopping by. To follow this blog, look above this article just to the right of the header and find the three small lines next to the Search button. Click on the lines and then find the blue Follow button and click on that. You're done !  ...So you know it’s going to be a Bad Day when you get a letter from your Neurologist’s office stating that your doctor is leaving (no reason or explanation given, of course) and that you need to find another neurologist either from within the small practice or somewhere else. This is with the knowledge that getting an appointment with a neurologist is about as difficult as getting front row seats at a Taylor Swift concert . Not the easiest thing to do.   Like so many other issues we must handle – we have to pivot frequently, deal with unexpected setbacks, and then try to figure things out as quickly as possible. Our health is at stake. And we often