Conflicting Diagnosis

    • January 26, 2020 at 1:02 pm

      I was recently diagnosed (3 months) with CIDP after having have seen two different Neurologists. The first Neurologist in Canada did an EMG and advised me it would take 6-7 weeks to send me and my Doctor the results. I decided to head to Buffalo and see a second Neurologist who, after a physical examination, two MRI’s and a spinal tap, diagnosed me with CIDP. This all took place in the course of one week. (The MRI’s also showed a disc extrusion at L5-S1.)
      I have since had two IVIG treatments and am scheduled every 4 weeks going forward at this time. (I have not seen any benefits yet from these treatments yet however understand it can take 3-6 months to start to see any benefits).
      Two weeks ago I received the report from the first Neurologist whose report says that he does not believe this is polyneuropathy related nor GBS and that he believes it is more related to L4-L5 issues.
      In summary, I have conflicting reports now and have now been referred to another CIDP specialist to get a third opinion. I understand that there is a high % of people from all I have read that are diagnosed with CIDP incorrectly that in fact do not have it.

      Have any others out there experienced this challenge as you tried to navigate the waters of getting a correct diagnosis between disc/related issues and GBS/CIDP?


    • January 30, 2020 at 9:12 pm

      Initially before sending me a neurologist, the doctors were saying my problem was spinal because the MRI revealed a compression fracture and stenosis (L5/S1). I was sent to physical therapy but it didn’t help much. Eventually I was sent for a nerve conduction test which indicated demyelination, then later a spinal tap that confirmed CIDP.

      I started IVIG in December. I have noticed a small improvement, but nothing that gets my hopes up.

      FWIW: During my whole ordeal, I was online searching for *anything* I could find that might help. Eventually I ran across CIDP which described the condition perfectly. I contacted my doctor and he pushed to get me into the neurologist quickly rather than waiting several months. If I had to wait those few months, I may have deteriorated to the point of not being able to walk.