Multifocal Motor Neuropathy (MMN)

    • Anonymous
      May 3, 2011 at 10:19 pm

      Hi everyone I went to the Canadian GBS / CIDP Conference in Toronto and I found this Pamphlet called Multifocal Motor Neuropathy and I read that and I also went to this website
      [url][/url] which explains it also and I feel I might have this variant of CIDP because I was told I have muscle twitching that is not related to my sleeping disorder.
      It say’s ((Multifocal motor neuropathy (MMN) with conduction block is an acquired immune-mediated demyelinating neuropathy with slowly progressive weakness, fasciculations, and cramping, without significant sensory involvement. ))

      I think I don’t have that much sensory involvement that is why my Neurologist says I am not having a relapse last week when in actual fact since I saw her I feel worse. While in Toronto early Sunday morning 3 am I had so much pain in both my calves it was unbearable. They were warm on the outside but felt like there was ice on the inside that went right to my toes which were ice cold. I know my finger tips were ice cold last week when I saw my Neurologist. My fingers were 24.9 C when it should be around 35 C. Also in Toronto when I was talking to Sylvie Daigle (she is on the board of Director and the local Liaison person) my finger were also ice cold. Now Sylvie mentioned her Neurologist is very good and is at the same hospital I see my Neurologist but I wonder how long it would take me to get in to see him and if he is taking new patients. I don’t feel I can’t wait to long since I am starting to get more tired and weaker but also getting the heat spells where I feel sick to my stomach when I over do things and I am not overdoing things at all. From last Tuesday till today I noticed I am going down hill faster then my last 2 relapses and slightly different symptoms this time which scares me.

      Does anybody know more about Multifocal Motor Neuropathy or anybody on this forum has this variant of CIDP?



    • Anonymous
      May 3, 2011 at 11:52 pm

      Hi Sue, My husband has MADSAM, but was investigated for MMN because he has almost no sensory symptoms. He didn’t have the Anti-GM1 antibodies which are often present in 50-85% of those who have it. I know that steroids make MMN patients worse and IVIG is the treatment of choice.

    • Anonymous
      May 4, 2011 at 7:03 am

      Thanks Laurel In the past Prednisone helped me but this time around I find the symptoms I have are different somewhat then before and this time I read the literature on MMN and it sound like I have MMN at this time but before I had signs of CIDP. I will have to look up MADSAM to understand more about it and compare it to CIDP/MMN

      Thanks for your help


    • Anonymous
      May 8, 2011 at 7:12 pm

      There were several doctors who suggested I might have this condition. Here is what the NIH says about it

      “[I]…Is there any treatment? Treatment for multifocal motor neuropathy varies. Some individuals experience only mild, modest symptoms and require no treatment. For others, treatment generally consists of intravenous immunoglobulin (IVIg) or immunosuppressive therapy with cyclophosphamide. …[/I]”

      and, more from [url][/url]

      “[I]…B. Electrodiagnostic Classification
      Motor neuropathies can be initially subdivided on the basis of electrophysiologic data.

      1) Patients with MMN have, by definition, focal block of nerve conduction along the course of motor, but not sensory, axons. Conduction block has been variably defined as a 15% to 50% reduction in the compound muscle action potential at proximal as compared with distal sites of stimulation….[/I]”

      The NEUROMUSCULAR DISEASE CENTER Washington University, St. Louis, MO USA article goes on to explain,

      “…Immune demyelinating Neuropathies. Although MMN and CIDP are both demyelinating neuropathies, the differences in their clinical, electrophysiological and immunologic features are more prominent than their similarities. MMN commonly presents with distal asymmetric weakness while in CIDP, proximal symmetric weakness is a more common finding. The remitting and relapsing course that may occur in CIDP is uncommon in the motor neuropathies. Patients with MMN rarely have significant sensory symptoms while in CIDP, sensory signs are the rule…”

      For those of you not familiar with these two terms, here’s how I look at them:

      Distal- means the furthest away from the body

      Proximal- nearest the body, connects to the body.

    • Anonymous
      May 8, 2011 at 7:17 pm

      A Pubmed article is quite helpful, to me, in understanding these two diseases.

      “[I]Multifocal acquired demyelinating sensory and motor neuropathy: the Lewis-Sumner syndrome.
      Saperstein DS, Amato AA, Wolfe GI, Katz JS, Nations SP, Jackson CE, Bryan WW, Burns DK, Barohn RJ.

      Department of Neurology, University of Texas Southwestern Medical Center, Dallas, USA.

      We report 11 patients with multifocal acquired demyelinating sensory and motor (MADSAM) neuropathy, defined clinically by a multifocal pattern of motor and sensory loss, with nerve conduction studies showing conduction block and other features of demyelination. The clinical, laboratory, and histological features of these patients were contrasted with those of 16 patients with multifocal motor neuropathy (MMN). Eighty-two percent of MADSAM neuropathy patients had elevated protein concentrations in the cerebrospinal fluid, compared with 9% of the MMN patients (P < 0.001). No MADSAM neuropathy patient had elevated anti-GM1 antibody titers, compared with 56% of MMN patients (P < 0.01). In contrast to the subtle abnormalities described for MMN, MADSAM neuropathy patients had prominent demyelination on sensory nerve biopsies. Response to intravenous immunoglobulin treatment was similar in both groups (P = 1.0). Multifocal motor neuropathy patients typically do not respond to prednisone, but 3 of 6 MADSAM neuropathy patients improved with prednisone. MADSAM neuropathy more closely resembles chronic inflammatory demyelinating polyneuropathy and probably represents an asymmetrical variant. Given their different clinical patterns and responses to treatment, it is important to distinguish between MADSAM neuropathy and MMN.[/I]"

    • Anonymous
      May 12, 2011 at 9:51 pm

      It is interesting that it mentions that people with MMN typically do not respond to Prednisone.
      I responded to Prednisone so I probably do not have MMN but I wish I knew for sure if I still had CIDP or something very similar to it. I am hoping to get a 2nd opinion. I was talking to regional liaison person and she said she would try to see if her DR would consider seeing me.
      I find some days I don’t have any symptoms of CIDP except being so much more tired in the last few months and then other days I have pain in my calves legs or back.
      I work but not 8 hour days anymore and then when I come home I relax a bit before supper then I have to get about a 2 hour nap in the evening. That is what I hate so much is that I get tired so much more then I use to.
      One thing I want to mention when my Neurologist checked my reflexes in my knees they were great. So If I do have CIDP why would I have such good reflexes. But when she checked my left wrist I noticed that there wasn’t any reflexes compared to my right wrist. I am also taking more pain medication so maybe that is why I am more tired some days. I am just so confused. I know something going on with my body but being told I am not having a relapse does not sit well with me.