Diagnosis Help

    • September 17, 2015 at 4:02 pm

      Hello everyone, I am a 23 year old woman and starting in 2013 I experienced weakness in my legs. Then in April 2014 I was diagnosed with moderate GBS and received IVIG. Symptoms were mainly located in the left arm and left leg, although weakness was still present in right leg. I received some relief from IVIG that summer but once fall arrived I became weak again, and continued to become weaker throughout winter and spring 2015. Then this past summer I experienced increased fatigue, weakness, numbness, and tingling now in all four extremities, including my right arm, along with weakness in the front of my neck, trouble swallowing, etc. I went to a new neurologist at the end of August and I had a nerve conduction study and emg done last week, at this time I had already felt slightly better. NCS was normal but emg showed reduced recruitment in multiple muscles in arms and legs; increased duration, amplitude and polyphasic muaps in some muscles in arms and legs; and decreased activation patterns in gastrocnemius. The neurologist said I had a few pinched nerves, even though I had MRIs this august and they were clean, and said it was radiculopathy. My question is would GBS still be progressing like this and can I really have radiculopathy in all areas without it being present on an MRI? Also, my uncle has CIDP so my other thought is could this be progressing to CIDP? Please let me know your thoughts.

    • jk
      September 19, 2015 at 12:05 pm

      The questions you are asking and the answers you seek should come from a Neurologist who specializes in CIDP. Better yet, find a neuromuscular CIDP specialist if you can.

      This web site has links to Centers of Excellence. Go to one if you can. GBS lasting longer than a few months is generally considered to have become CIDP.

      Certainly, everyone’s case is different. MRI with gallidium enhancement was used during my diagnosis. It seems to me those results were not helpful. A normal MRI likely won’t show much nerve damage.

      One NIH study on galladium enhancement reports “MRI results were correlated with data collected from chart review. Enhancement of the cauda equina was seen in 11 of 16 CIDP patients (69%), and in none of 13 control subjects. Nerve roots were enlarged, most significantly in the extraforaminal region, in three CIDP patients, and in one patient with Charcot-Marie-Tooth type 1A. MRI findings did not correlate with disease activity and severity, nor with any clinical or laboratory features in patients with CIDP.”

      Please note the last sentence. “MRI findings did not correlate…”

      You seem to have reported having at least one “second” opinion. Best get any further opinions from experts.

      good luck