Reply To: Past GBS patient with ongoing isssues

It is possible that you had a mild GBS case. And it’s possible that these are CIDP flares. Most people are used to seeing a slow steady build of symptoms and then things getting a little better or worse. They aren’t used to seeing the remitting and relapsing form. Your doctor is right to be skeptical, to rule out other things, but nothing you’ve said rules out CIDP (nor one of the many variants of CIDP).

I had many of the symptoms of CIDP for 6-7 years before I got diagnosed. The doctors assumed it as Fibromyalgia and never looked deeper than that. Then I had a sudden and severe increase in pain, muscle weakness, low back pain, and loss of mobility in my legs. When my rheumatologist gave me steroids because he thought I was fighting a post-surgical related Fibro flare, it made a dramatic difference in just a few hours. When they wore off everything went back to bad and kept getting worse. That was my rheumatologist’s clue that something neurological was happening and he referred me out. Now that I’m doing IVIG infusions with other CIDP patients, I’m seeing how we all got here in different ways, and different patterns, and different severities. Those who had a distinct and significant GBS episode before the CIDP tended to have clearer diagnosis histories. Those of us who skipped GBS often have had several wrong diagnoses and failed treatments along the way before we got properly diagnosed. Unfortunately that means some of us slow cases have accrued significant levels of nerve damage over the years we weren’t being treated. Good luck.