New Diagnosis / CIDP

    • laural446
      September 17, 2015 at 12:08 pm

      Hi everyone,

      I’m a 29 year old female and was just diagnosed with CIPD two weeks ago after suffering a terrible viral illness. This is actually the 2nd time this has happened to me but was misdiagnosed three years ago. My neurologist said I have a variant form because the nerves affected are isolated to just my left arm. I woke up three days after the viral illness and could not move my left arm without extreme pain. The first time it was my right arm. I am still left with residual weakness in that arm/shoulder. Right now I am on high doses of Gabapentin, Acyclovir and Prednisone and we will decide at my next appointment if I should move forward with IVIG treatments. Does anyone have any advice or experience about the IVIG or my type of CIPD with just the isolated area being affected? I’m feeling so confused and worried about the future. I want to take the right steps and I want to make sure I’m a good candidate for IVIG. I was told the most beneficial time is when the weakness sets in and I am still in the stage of excruciating pain. I would be so appreciative for any thoughts/comments!

      Yours in health,
      Laura

    • GH
      October 1, 2015 at 2:31 pm

      If you indeed have a condition which will respond to IvIg, then the sooner you get treatment the better. In my case, IvIg was started the day after I was diagnosed. As it turned out, that was not the best treatment for me, but for most people with CIDP it is.

      I’ve never heard of asymmetric CIDP.

      • mcarrion999
        October 23, 2015 at 9:35 pm

        Laura
        I recently joined this group in hopes to share with others my experience (positive). I am fortunate to be reacting well to IVIG. I wont bore you with my background as I would want to focus on the IVIG question. I was diagnosed with CIDP and began receiving bi-weekly infusions of IVIG at my house with a nurse. I felt the effects of my nerves within 3 weeks. Prior to taking IVIG I could not get up from a chair, shower or go to the bathroom by myself. The way the Dr described to me the situation is that IVIG knocks my immune system into order and neutralizes the demons that are eating at my nerves. IVIG does not help “fix” your nerves but rather hopefully stops the war on our nerves; depending on the situation our nerves in your peripheral system heel or regenerate. My Dr mentioned IVIG is the only FDA approved medication to help CIDP. IVIG has been a miracle drug for me… I could not say enough good things, but it is also a matter of how fast you are diagnosed and how your body reacts to the heeling process. I hope this helps!! In brief… if your insurance covers IVIG do not hesitate, almost no down side.
        Mauricio

    • jk
      October 7, 2015 at 2:21 pm

      http://neuromuscular.wustl.edu/antibody/pnimdem.html

      Has a nice chart.

      PubMed is considered public domain. I have copied the entire article here:

      Curr Treat Options Neurol. 2001 Mar;3(2):119-125.
      Asymmetric Acquired Demyelinating Polyneuropathies: MMN and MADSAM.
      Katz JS1, Saperstein DS.
      Author information
      Abstract

      More than a half a century after Austin’s initial description of chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), the clinical spectrum of chronic acquired demyelinating polyneuropathies has expanded. Currently there are a number of entities that can be put under the heading of chronic acquired demyelinating neuropathy (CADP) based on differing clinical presentations. In this scheme, CIDP is used only to refer to patients with demyelinating neuropathies and generalized symmetric weakness. In contrast, multifocal motor neuropathy (MMN) and multifocal acquired demyelinating sensory and motor neuropathy (MADSAM) fall into the category of asymmetrical, multifocal forms of CADP. These are distinguished from each other only by the presence of sensory involvement. In our opinion, there are pragmatic reasons for splitting these clinical presentations into distinct entities. Although each of these clinical subtypes shares some basic similarities, there are important differences. MMN is usually considered resistant to corticosteroid therapy and the first line agent in this disorder is intravenous immunoglobulin (IVIg). MADSAM neuropathy can be responsive to prednisone or IVIg, and has a profile more analogous to classic CIDP with regards to its laboratory features and treatment response.

      The short answer is that both MMN and MADSAM mimic CIDP with subtle differences.

      these are only some of the reasons it is vital to be seen by an expert.

    • GH
      October 8, 2015 at 1:31 am

      That’s an excellent summary you found, jk.

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