walking slower and slower 8 years post GBS

    • bahman
      October 29, 2015 at 3:59 pm

      Hello everyone.

      Help / input would be greatly appreciated.

      BACKGROUND: My mom was diagnosed with severe GBS apx 8 years ago, neck down but even eye lids were effected with paralysis. She survived, nothing short of a miracle. She is walking but like a toddler.

      AREA OF CONCERN: For the last few years, she has complained that she is walking slower and slower. She has been tested (nerve conduction studies) but the doctors say they can’t find anything.

      Any input please? Anyone experiencing this? Thank you all very much,

      Bahman Mehdizadeh

    • Jim-LA
      October 29, 2015 at 4:38 pm

      GBS is almost always a one-time event. If symptoms return a few years following onset, it is probably the chronic form of the syndrome: CIDP.

      Diagnosis should now be that for CIDP. NCS/NVS is only one of the diagnostic tests available. Please see the following booklet for an overview of the conditions and the tests involved in confirming its presence:
      http://30g7el1b4b1n28kgpr414nuu.wpengine.netdna-cdn.com/wp-content/uploads/2012/01/CIDP.pdf

      If CIDP is indicated, perhaps the first treatment sought should be Plasma Exchange, followed by IVIg.

    • bahman
      October 29, 2015 at 6:55 pm

      Dear Jim

      I very much appreciate the reply.

      The neurologist did have CIDP in mind though I’m not sure of the exact testing.

      The issue is the reporting of not being able to walk as much or as fast has been going on for about 3 years, not weeks as most CIDP symptoms.

      Does this trigger any ideas?

      Thanks again…..

    • Jim-LA
      October 29, 2015 at 8:29 pm

      The symptoms vary greatly between people. Some people experience more of a burst of symptoms. But a low grade CIDP can come on over many years. This is easier to treat because you are not dealing with a massive attack by irregular T-Cells that cannot recognize “self”. PE can take them out, IVIg can stop them from coming back.

      First thing is to test for the presence of the cause then prescribe cause specific treatments.

    • bahman
      October 30, 2015 at 2:40 pm

      Jim

      I understand your reply and I thank you.

      If I may pick your brain some more, is there a test to determine CIDP? Nerve test? Blood test? Or is it a general consensus given the symptoms? Or do they, given the “likelihood” of CIDP, administer PE and/or IVIG to see if problem goes away? Lastly, what is PE? Oh and one more thing please, is this common knowledge between neurologist, assuming thats the type needed to be seen, or should be try to find a neurologist that specializes in this field.

      Thanks a million,

      Bahman

    • GH
      October 30, 2015 at 3:51 pm

      PE is plasma exchange. The blood is pumped out of the body (not all at once!) and separated in a centrifuge. The plasma is separated to be discarded and the blood cells are put back with new plasma. I had nine treatments of that over a three-week period.

      CIDP usually produces the same effect on the spinal fluid that is typical of GBS. The nerve conduction test can show the effect of demyelination. If the pattern of symptoms is typical, CIDP might be diagnosed without the spinal test. However, because both PE and IvIg are expensive treatments, and because Ig is a limited resource, insurance companies may want more tests rather than fewer to make the diagnosis.

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