More problems than I first thought

    • Anonymous
      November 1, 2009 at 10:11 am

      Hello Friends
      I have battled CIDP for about 1 1/2 yrs and was told Thursday that I am now in remission; however they have also given me some news that I was not expecting. Apparently on my MRI I have several lesions that are described as CNS demylanization which usually means MS plus on my last spinal tap they determined that I have mitochondria disorder. My spirit was sunk and I am trying to come to terms with this. I have researched a lot of both of these problems. Wondered if this has happened to anyone else. Thanks for your time.


    • Anonymous
      November 1, 2009 at 11:19 am

      hey sue. I am so sorry to here that. I know that being taken from remission status to that must have been quite a high then a low.

      I had a lession in my central nervous system in 04 but it did not contrast. I dont know what that means. the doctor came in after the first mri and said it was probably ms and then I had the gadolidian contrast added and it did not show anymore. so then he said it wasnt ms. my most recent mri there isnt even a scar from that lession. I still dont know what that means.

      I just thought maybe that would cheer you up some. I guess sometimes they can find lessions and still not be MS.

    • Anonymous
      November 1, 2009 at 8:25 pm

      Hi Sue,
      It sounds as though you may be a diagnostic enigma. Some of these neuromuscular disorders are very difficult to pin point, and many have overlapping symptoms. Hubby has CIDP and I have had MS for 25 years. Don’t let the query of MS scare you too badly. I have done very well over the years and in some ways do better than hubby. I have been on Rebif, Betaseron, and now I am on Copaxone. I have very few disabilities i.e. some vision problems, some leg weakness, but on the whole I am very stable with my meds. And I understand with mitochondrial disorders vitamins and antioxidants are very helpful. Good luck.

    • Anonymous
      November 1, 2009 at 8:30 pm


      I have not been through that particular situation BUT…. One of the most difficult things about a “rare” type of neuropathy is getting a correct diagnosis. I was diagnosed with alcohol neuropathy, peripheral neuropathy, Charcot Marie Toothe, stress, and finally CIDP.

      I have a sister-in-law with MS, and her sufferings are similar to mine. There is a treatment regimen, in fact more research monies go to MS than to CIDP. Although both disorders stink, both can be dealt with and lived with.

      I wish you the best of luck. Keep on learning because an informed patient is a better patient.

      Dick S

    • Anonymous
      November 3, 2009 at 8:12 am

      Thanks to all of you. I have appreciated this forum so very much even though I don’t get on it that often. There is a world of knowledge to learn from all of you.


    • Anonymous
      January 8, 2010 at 12:37 pm

      I have done a lot of questioning as to why I would have both of these diseases at the same time. Are they related? Neurology department at Barnes Hospital state that there is no medical–scientific connection between MS and CIPD; however, they said that many times when they treated CIDP patients, they also note that the patients have MS. I think they are definitely caused by one or the other. It’s possible that they haven’t been able to scientifically see how. Opinions please?


    • Anonymous
      January 8, 2010 at 1:37 pm

      Hi Sue,
      When you look at the CIDP USA website, or the GBS/CIDP website,
      you will see there are two sister diseases to CIDP, or as I put it,
      to “ugly sister diseases”.
      There is CIDP, that affects the peripheral nervous system.
      Then there is MS that affects the CNS, (Central Nervous System).
      Then, the worst, is ALS, which affects both systems.

      MS and CIDP are VERY similar diseases.
      With CIDP, only 1 in 100,000 people are affected.
      However, with MS, 7 in 100,000 people are affected.
      That is why more research is being done on MS, than CIDP.
      There are more people with it, plus many famous people have it.
      So, MUCH research is done on MS, and every year new meds come
      out for MS. (A best friend has MS.)
      But that’s all it took was to have some famous people have it,
      which pushed for funding for MS, (you hear about MS Marathons all the time, etc.).
      So, with all the new meds on the market for MS, you may be in a good position to put that into remission, too. And with all the research being done in trying to eliminate that disease, perhaps in the not-too-far-off future, there may be a cure for MS.
      It is a shame that not that much research is being done on CIDP, but that is the problem with the rarer diseases.
      So, Sue, good luck, and let us know how it goes. There is much hope with MS with the research and new meds that keep coming out.

    • January 8, 2010 at 5:31 pm

      People with chronic headaches can have lessions on the mri results.
      Dawn Kevies mom