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    Any input welcome.

    Hello all, I have yet to be diagnosed with MS but it is suspected. A MRI that I had in 04/17 (for a check up for my NF1) showed 2 brain lesions that I did not have in the previous brain scan I had. My neuro surgeon who monitors the schwanoma at my c2-c3 saw my scans and said she thought it was MS. I kind of blew it off b/c I felt fine and didn't think any thing of it. My scans also go to Sloan Kettering as they also montior my schwanoma they also called and said be sure to have a follow up scan because you didnt have those brain lesions in your previous scan. Well I blew that off too. In October 2017 I started feeling real yucky. Pins & needles/tingles in legs, feet and my left arm. EXTREME fatigue a heavy pressure on my chest occasional tingly face, dizzy sun up to sun down.

    So I went to my PCP in December after realizing I didn't just have a virus or something. She said lets set you up with a nuerologist ,as it's not what the nuerosurgeon does. I saw him in Jan '18 and had a new MRI that showed yet another lesion (3rd one) Since then I've done a bunch of differnet process of elminiation tests and appt's. I requested a B12 serum test it was low 256 but not devistatingly so. After a month of taking Methyl sublingual B12 my number is 562 I would say I have a pinch more energy but not myself still.

    I have always been fit and active (running 5k's kayayaking 20+ miles on a Saturday and such) I have an appt. Jun 20th with the nuerologist he says if the last tests I had (stress echo, ekg) were inconclusive he would start me on Copaxone. I really want to feel better but dont want to take this DMD if MS isn't what I have. Am I wrong to insist on a lumbar puncture before starting any drug? Am I right that can give a more conclusive answer. ANY INFO/INPUT WELCOME.
    39 years old...want to be the more normal me by 40 LOL

    #2
    Hi and welcome! Good questions and you will probably get a variety of opinions.

    If your neuro isn't a MS specialist I would get a second opinion with one before I did anything. In cases where MS isn't a slam dunk I think LPs are valuable tools and would probably want to take that extra step prior to starting any DMD.

    That said I'm personally in favor of attempting to treat this disease with pharmaceuticals if you are diagnosed. Best, Jules
    He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
    Anonymous

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      #3
      Hello Holly,

      You are correct that an LP would be helpful for diagnosis.


      The presence of OCB bands in cerebrospinal fluid is used in the diagnosis of MS. Please see... Research: oligoclonal bands in CIS increase your risk of conversion to MS http://multiple-sclerosis-research.b...m/search?q=CIS

      Since you quite possibly have CIS, I suggest you type CIS in the search box at that site to begin educating yourself.


      You will find a wealth of valuable info at that site. Information you can use to improve your chances for good health.


      I'll quote some of only one article at that site since you asked specifically about insisting on having an LP... and you are absolutely correct insisting on an LP...

      ResearchSpeak: converting from CIS to Multiple sclerosis

      Do you know if you have OCBs in your spinal fluid? #MSBlog #MSResearch #ResearchSpeak

      http://multiple-sclerosis-research.b...om-cis-to.html

      "The Mouse Doctor wants me to highlight our international CIS study's findings. The results are important in that they confirm that the best predictor we have of having a second attack of MS is the presence of local synthesised oligoclonal IgG (immunoglobulin G) bands in the CNS (central nervous systems). This test is done on the spinal fluid and is one of the reasons why I prefer to make the diagnosis of MS with the help of spinal fluid analysis. Although you can make the diagnosis of MS without a lumbar puncture, and spinal fluid analysis, you are less likely to be misdiagnosed as having MS when you have a MS mimic with spinal fluid analysis...

      "I am also in the camp that accepts that OCBs are an important part of the MS pathology and are driving MS disease progression. These OCBs are highly selected antibodies and there is a large body of evidence emerging to support the hypothesis that OCBs are pathogenic and responsible for driving many aspects of the MS pathology, in particular the gray matter lesions in the cortex. This is why in the future we may need to clear the CNS of OCBs if want to prevent the delayed non-relapsing secondary progressive phase of the disease."

      "Does this have relevance for pwMS? Yes, if I had MS I would want to know if I had OCBs. The latter are part of the diagnostic criteria and provide prognostic information. You can never have enough information about your disease. I predict that we are about to enter a phase where we try different treatments to get rid of the OCBs, i.e. treatments to eliminate the plasma cells from the CNS of MSers. Watch this space!"


      Best of luck to you, Holly. I am so sorry you needed to be here but I congratulate you because you have already begun educating yourself about your health concerns. If your knowledge does not extend beyond what your doctors tell you, your health will suffer immeasurably, IMHO. Life has taught me that lesson and confirmed it many times over. Knowledge is power. And, it is health, also. The site I recommended will increase your knowledge of issues you are facing.


      Rolly

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        #4
        Originally posted by hollyscoter View Post
        I really want to feel better but dont want to take this DMD if MS isn't what I have. Am I wrong to insist on a lumbar puncture before starting any drug? Am I right that can give a more conclusive answer.
        Hi hollyscoter

        Your neurologist should have no problem with the lumbar puncture, since the information obtained from spinal fluid analysis will be useful to him in the quest for a diagnosis.

        Also, it looks like you will probably have nagging doubt and uncertainty, if the neurologist doesn't make use of all available diagnostic tools.

        Good luck!

        Take Care
        PPMS for 26 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #5
          Thank you Jules A, myoak, KOKO. Thanks for the link and information

          Comment


            #6
            information

            Please read up on the study being completed by the NMSS comparing the Wahls Protocol and the Swank Diet. See what fits for you and your knowledge and take that into consideration regardless of diagnosis and/or you taking a DMD.

            There is also some wonderful information out there from the Autoimmune protocol, a lot like the Wahls Protocol. Kind of tough to follow, but, if you want to stay healthy you have to eat healthy, IMO.
            God Bless and have a good day, Mary

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