Past GBS patient with ongoing isssues

    • April 19, 2018 at 9:33 pm

      Hi all!

      I’m about a day out from a possible GBS relapse scare. I lost strength in my legs, bad neuropathy in my legs. The ER doctor attempted a spinal tap but was unsuccessful. I’m doing better today, we think the steroid shot my doctor gave me before heading to the ER might have helped. I’m a past GBS patient and have concerns that I might have CIPD. I’m wondering if anyone has had similar issues as I have.

      When I was diagnosed with GBS in 2016, it was a relatively minor case, showing up only on my right leg with no progression. I’ve had a lot of weird things going on since then. In December of that year, I had severe burning pain in my arms, periods of weakness.

      Starting feb 2017 I’ve had these reoccurring bouts of severe fatigue and weakness. Sometimes I’m unable to function for 3-4 weeks at a time. But after some time, it mostly goes away. I come out of it with muscle weakness and neuropathy for a few weeks or longer. I start over and rebuild. With the last fatigue, I went from being able to do 30-40 minute walks with my dog, to only managing to do 10-minute walks. I’m struggling to function or live. I’m my sole income in my household until my partner finishes school.

      The ER doctor referred me to a neurologist. she has doubts that it could be CIPD because it should have been more progressive. She also has doubts about my GBS diagnosis. I will have a nerve conduction test on Monday. She’s out of network, so I’m going to pay out of pocket for the test and consult, but my insurance covers hardly any neuros in my area. I’m wondering, has anyone has CIPD or a related condition that goes away for short bouts of time?

      I know that no one on a forum can diagnose me, but I was hoping to hear from others about their experiences

    • GH
      April 20, 2018 at 12:24 am

      I don’t understand why an ER doc would be doing a spinal tap. It isn’t an urgent emergency and it is best done with special equipment which would not normally in the emergency department. When I needed one I was sent to a unit where that was done under a fluoroscope.

      Your pattern is not typical. That is why your neurologist has doubts. It is important that she keep an open mind until the diagnosis is solid.

    • April 20, 2018 at 3:49 am

      I don’t know either. He was concerned that the GBS might be coming back. The numbness and weakness were much worse than I’ve been in awhile.

    • April 20, 2018 at 1:16 pm

      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.