Reply To: Anyone with Sensory Predominant CIDP?

Hi, that’s the first time I have heard of a connection with the herpes virus and CISP. I’ve not read it in any of the literature either. CISP is extremely rare so I don’t think one can say most people. I’ve not been tested for it. I think you should be confident with your diagnosis because having a diagnosis is a big help and it’s not helpful if someone tells you you should have herpes too to fit the diagnosis. CIDP is on a wide spectrum. I had a frustrating time also getting a diagnosis. My GP had no idea my symptoms were neurological, I had to tell her that (I came to my own conclusion after talking to various people) and the neurologist she sent me to was a Parkinson’s specialist (and subsequently told me he had 12 CIDP patients) and yet insisted nothing was wrong. All the numerous blood tests kept coming back normal and astonishingly for a neurologist he told me I didn’t need any further tests. Luckily my uncle is a neurologist. He lives in Austria and when I caught up with him he couldn’t believe my then neurologist hadn’t requested NCS. It was quite a battle and I got a second opninion from another neurologist and then went and saw my neurologist again and when the NCS showed pronounced demyelination I changed neurologist.

Regards O