No announcement yet.


  • Filter
  • Time
  • Show
Clear All
new posts


    Dear people,

    after 3 years (visiting several neuro’s, some specialist in ms) i still have nog diagnose....had several mri’s and one LP. Mri’s showing in head 2 frontal "non specific” lesions (no MS says ms-neuro) and one at c4-c5, also “something unidentified”, but no MS lesion says ms-neuro. In his report he reported a “syrinx”, but i dont know he is right. Last mri was a Tesla 3.0.

    Lp showed an slight elevated s-100 protein (3.9) and my “total protein” was 445, against the limit of 450. No specific o-bands and mbp/gfap/igg-index where normal.

    The cervical lesion was not present in jan 2017, but in nov 2018 showed this kind of syrinx.

    i have many problems, muscle tightness/pain/pricking (mainly legs), swallowing problems, cold hand/feet, pain neck, bowel en bladder problems, sore tongue etc.

    what to do? Pfff....thanks for answers

    I can only imagine how frustrated you are. Did your neuros look at the MRI or just rely on report? If a syrinx, did they indicate what symptoms could be related to this and give you options to alleviate, whether drain it or remove it?

    Whether MS or not, it can be complicated. Even with MS, it is a challenge to rule out other causes of symptoms before attributing it to MS.
    If they could treat the syrinx, may then be easier to see what is left.

    Hope you get some answers soon.
    DX 01/06, currently on Tysabri


      Hi rogier1973,

      I'm sorry you still seem to be struggling with what your numerous Drs. are telling you. Lesions refer to something that isn't supposed to be there and can include many things found on MRIs and is not necessarily indicative of MS.

      Have you asked your Drs. for an explanation of the syrinx and what that means in regards to your symptoms? By everything you have written in this thread and previous ones none of your testing indicates MS as the cause for your symptoms.

      I went looking for information about the syrinx you have mentioned and found quite a bit of information.

      I wish you all the best and I do hope you will seriously consider what your many Drs. are telling you. Take care
      Diagnosed 1984
      “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic