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Thread: If anyone remembers me?? Finally answers to my oligoclonal bands in csf only!

  1. #1

    Lightbulb If anyone remembers me?? Finally answers to my oligoclonal bands in csf only!

    It has been years since I have looked here or posted here. I spent many years looking for the reason after 5 lumbar punctures I had the same amount of oligoclonal bands in my csf. With those bands came a dx of MS. The problem was that I never showed any leisons in my brain. I didn't progress and went to many teaching hospitals finally ending my search with frustration at the Mayo Clinic in AZ. No answers so I finally stopped looking for my sanity.

    Forward to the present...I have a daughter and grandaugter who has hypermobility syndrome and hypotonia. She is entering puberty and is having more and more problems with weakness in her legs and other problems. We always said that when we found out what was wrong with her that we would know my diagnoses. finally happened that I went back to my original neuro with history of my granddaughter and the health issues of my daughter. I had a knee replacement 4 years ago and it has already become loose. The orthopedist questioned me and said I might have a genetic connective disorder called Ehlers-Danlos Syndrome Hypermobility type. My neuro confirmed that dx and we talked about the bands in my spinal fluid and came to the conclusion that the history of my having a bad case of mumps encephalitis as a child made the bands in my spinal fluid. Ehlers-Danlos is a rare in 5,000.
    If there is anyone here who remembers me, I wanted to write that I finally discovered my diagnoses. Thank you for reading this post.

  2. #2
    Distinguished Community Member renee's Avatar
    Join Date
    Oct 2006
    Up-upstate NY where it gets cooooold.


    Welcome Fx2-
    It is SO good to have answers.

    Take goos care.

  3. #3
    Distinguished Community Member
    Join Date
    Oct 2006
    Red Sox Nation :D


    Take that, Mayo Clinic!

    I am glad that you know. There is a peace of mind that comes w a diagnosis when you know there is something wrong.

    Is there any treatment plan?

    Best to you,
    There comes a time when silence is betrayal.- MLK

  4. #4
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Blog Entries


    Welcome back! I do remember the name but unfortunately I can't remember the details.

    I'm glad you have a diagnosis at last. I'm sure it wasn't easy being in limbo for so long.

    Thanks for the update. Take care.
    i don't trip--I do random gravity checks.

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  5. #5
    Distinguished Community Member Cherie's Avatar
    Join Date
    Oct 2006


    I do remember. And have just come across two other families in our area where Mom is w/c bound but not diagnosed and daughter was diagnosed with EDS leading to Mom's ultimate diagnosis. Another family with CMT (Charcot-Marie Tooth) syndrome in undiagnosed Mom and pre teen daughter with similar symptoms.

  6. #6
    Distinguished Community Member SalpalSally's Avatar
    Join Date
    Oct 2006


    Welcome back Flower.. I'm glad that you have finally been validated.
    Are you going to be taking any DMDs? Hugs and good wishes.
    Love, Sally

    "The best way out is always through". Robert Frost

  7. #7



    I know you must be hugely relieved to have a diagnosis after all of these years.

    I wish you all the best for postive outcomes with the EDS.

    I have a friend who's grandchildren all have EDS to one degree or another [inherited thru their father, who has not been married to my friend since her kids were young]. Several of my friend's grandchildren are having a pretty rough time of it although they are being treated by the leading EDS expert.

    Good luck. At least you know where to aim now that you know the enemy.


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