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    Friend w/MS

    Hello, I am new here. Only posted a few times. My friend was waiting on results for Lupus which we thought she had and although she still has the symptoms they did an MRI of her brain and it revealed lesions associated with MS.

    Long story short, dr's did a spinal tap and checked out her fluid which was negative for lupus and lyme disease. It did show "two bands". Her dr. said over the phone that the bands were associated with MS and that she was in the early stages and he would review her charts and history and see her for her appt which was yesterday.

    Now she had some serious stuff happen after the spinal tap but she is doing better!

    Her dr. yesterday walked into the office and said to her that there were only two bands and that wasn't enough to determine MS diagnosis. She was floored! SO upset and not wanting to deal with trusting people who are basically telling her yes you have it but since you aren't worse off there is nothing we can do!

    The dr. said she had to have more bands plus the lesions to confirm MS for sure. He said that he was going to diagnose her with Fibromyalgia for now so that she can get a referral for PT and for meds. BUT it wouldn't cover meds to stop the progression of MS. So only a bandaid on this situation for now.

    dr. said that there are quidlines he is following and would be happy to refer her to another dr. for a 2nd opinion.

    She's in Maryland, what guidelines is this dr. talking about?
    Is there some guideline out there that we can go by to help figure this out?
    Should she go for a 2nd opinion?

    See I wouldn't tell another what the 1st one said because I feel they are all working together. She said he seemed to want to help her but had his hands tied.... I don't get it and I don't buy it. But then I am a cranky girl with a friend in need and I can do a dang thing about it so I might not be the best person to be dealing with her dr's right now lol!

    any thoughts/suggestions on this ?

    Thank you so much!
    Currently 3 years remission from Graves' Disease, mom has Crohn's, best friend just diagnosed w/MS.... I guess it could be worse! Don't just lay there...live life!

    #2
    The guidelines the neuro is speaking of is called the McDonald Criteria. There has been a criteria for diagnosing MS for many years.

    Here is some information about diagnosisng MS:
    http://www.nationalmssociety.org/abo...-ms/index.aspx

    Information on Lumbar Puncture results and the possibilities of what it could mean:
    http://www.nlm.nih.gov/medlineplus/e...cle/003428.htm

    When I had the LP mine showed 5 o-bands. I believe one o-band is considered normal but I could be wrong. Some with MS show o-bands and some do not.

    In my opinion: your friend should continue working with her current neuro, he sounds like he is trying to find answers to her symptoms. MS may come up again but all other possibilities need to be looked at before MS can be ruled in.
    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

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      #3
      I'm so sorry for what your friend is going through. That is very frustrating.
      I had my dx confirmed my one of the top MS specialists in the state of TX & I have never had an LP. I have read on this site that LP is not conclusive and can provide a false negative.
      Your friend needs a 2nd opinion, quickly. Maybe someone here can suggest a specialist in your area. Or the MS Society will have a list of doctors.
      DX 10/2008
      Beta Babe 12/2008-07/2013
      Tecfidera 07/2013-01/2018
      Aubagio 01/18-09/20

      Ocrevus 09/20-present

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        #4
        Thank you! I just spoke with one of the organizations and they were talking about "Clinically Isolated Syndrome(CIS)" and that type of diagnosis could help her in getting the meds she would need to help stop the progression. He also said that a second opinion would be in order only because the 1st dr. isn't talking about CIS and some dr's either do it or don't do it that way, he might not be one who uses that to get the treatment the patient needs.

        I asked her about the tests she has had and the dr's have ruled out everything else.
        She is pushing her body to move and function and it's hard for her.
        Her face is at least back to normal. At one point her whole right side of her face wouldn't move, it was droopy. Her general dr. was takign care of her and said it was nothing. Uhgg! At least she wont have to worry about going to that general dr. for now lol.

        Thanks for the info... i'll keep you all posted
        Currently 3 years remission from Graves' Disease, mom has Crohn's, best friend just diagnosed w/MS.... I guess it could be worse! Don't just lay there...live life!

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          #5
          Some insurance companys Limit the ability of a Dr or Nuro to so many MS dx per quarter. So one might put a new MSer on the back burner to remain employed and wait for the second or third flair before offical dx.

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