Lewis-Sumner Syndrome

    • Anonymous
      December 20, 2006 at 2:03 pm

      I just went for my second round of ivig (80gms per day for two days) and happened to see the neurologist at the hospital (not the one I was originally referred to).
      He had another neuro with him and was explaining to him (as if I wasn’t present, I hate that) that originally he thought I had ‘madsam’ (no idea what that is) but now was pretty sure that “CIDP variant he has is Lewis-Sumner Syndrome”. The funny thing is that about a week before I was doing some more research online and this was the same conclusion I had come to as well.
      The problem is I could find very, very little info on Lewis-Sumner Syndrome.
      Does anyone know any more about it?
      Hoping it’s not a permanent thing (I hate ivig).
      Thank you in advance.

    • Anonymous
      December 20, 2006 at 2:42 pm

      Here are a couple of links that I found, you will have to cut and paste them in a browser.:


      Hope that helps.


    • Anonymous
      December 20, 2006 at 2:55 pm


      I am diagnosed with Lewis Sumner variant of CIDP, which is just another name for MADSAM (Multifocal Acquired Demyelinating Sensory and Motor Neuropathy) Lewis and Sumner are the two Neurologists who documented the MADSAM variant, and thus named it after themselves. My diagnosis was originally CIDP, from UCLA, which was then modified to Lewis Sumner variant by another university clinic, then confirmed again by Mayo Clinic.

      The hallmarks of this variant are asymetric weakness, in other words, one leg may be several grades weaker than the other, etc. Additionally, motor conduction block, similar to multifocal motor neuropathy is typically found. It is described as lying between CIDP and multifocal motor neuropathy. The treatment options are essentially the same as CIDP, and it is a chronic, long-term condition. Like pure CIDP, it can be mildly to severely disabling. It can also relapse and remit, or slowly progress.

      As far as treatments, I have used IVIG, cellcept, plasma pheresis and high dose IV solumedrol. The solumedrol was a complete disaster which Mayo Clinic believes hastened an already ocurring exacerbation, leaving me severely disabled for over a half year.

      IVIG is the long-term treatment of choice for me, I currently infuse 30 grams once a week.

      Best of luck to you.

    • January 9, 2007 at 7:35 am

      It was great getting more infromation on Lewis-Sumner. I had thought it was the same as CIDP, just another name. I’m learning the computer as I go along so really rely on all of you to guide me and you guide me so well:D . I’ve so far had just the tripping, numbness and pain but as of late I’ve gotten what I think of as noodle leg, my right leg gets where I can’t control it. Doesn’t last very long but is irrating, any clue if this is going to prodress? I’m waiting for a call back from my doc but his nurse can be slow. I’d be thankful for any more info.

    • Anonymous
      January 9, 2007 at 8:29 am

      Hi Emseebee,
      It is really just basically one side more affected than the other, (asymettrical {spelling…lol}).
      All the same symptoms and problems of CIDP, just more on one side than the other, (I have my left side more affected than my right).
      Though, I also have small fiber atrophy, meaning it has gone into my autonomic system, (autonomic neuropathy), and it is ravaging my guts at the moment.
      I am getting plasmaphereses for one full week per month, which is helping with my motor nerves, but not the attack on my autonomic system, of which my Neurologist is trying to battle with meds at the moment.
      You can keep doing searches every now and then using “Lewis-Sumner”, as every now and then something new pops up about it.
      Good luck with your doctors’ plan of action…Kedaso

    • Anonymous
      January 11, 2007 at 8:34 am

      Well I never heard of this. My symptoms are more significant on one side than the other, too. My right foot, for instance, is partially paralyzed (and now braced) yet my left foot is weak but still quite functional. I’ll have to ask my bneuro about this next time I see him.

    • Anonymous
      January 11, 2007 at 3:50 pm

      I originally had numbness but since my first ivig treatment (fixed the conduction block that was causing my foot drop…wooohoo!) back in November, I’ve had no numbness at all but I keep getting weaker and weaker with fascilations everywhere possible and steadily losing muscle mass as well.
      Does the lack of numbness for two months still consistent with Lewis-Sumner or CIDP for that matter?
      When I was discharged from the hospital after my last ivig session on Dec 19, the neuro said my regular neuro’s office would be contacting me for a follow-up appt but they’ve yet to call. :confused: