Reply To: Your top signs that your CIDP is coming back/getting worse

December 12, 2017 at 1:41 am

The signs people talk about are all too real. I seem to have had this ‘cooking’ for many years, but first diagnosis was about 5 years ago. I’m fortunate that it’s been a slow progress, but starting to worsen in the last year.

As people describe problems with stairs, missing the table, etc. what we’re really talking about is proprioception. The ability to know where limbs, etc. are without looking. Touching your nose with your eyes closed is what’s used in roadside tests. I have to watch my feet, or I simply can miss the step. Only fallen down stairs twice, but hope to not repeat that. The funnier part of this is sticking a chip in my eye if I’m not concentrating…..or trying to explain why I tried to put a french fry (with ketchup…) in my ear. I can tell if signs are coming back if I do stupid things like this.
Thanks for the comments on taste. Wondered what was going on. But things that I’ve found to help immeasurably is tonic water for cramps. My neurologist suggested the quinine in tonic water rather than a prescription. And another is CBD. I can feel my legs relax and the pain subside in minutes. A bit of THC at night to sleep helps that too. But the loss of proprioception is the most problematic right now. I’ve spilled more wine glasses and run into people walking than I care to remember. Jim