Results 1 to 7 of 7

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. Well..it 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 syndrome..one 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.
    Flowerfloosey

  2. #2
    Distinguished Community Member renee's Avatar
    Join Date
    Oct 2006
    Location
    Up-upstate NY where it gets cooooold.
    Posts
    782

    Default

    Welcome Fx2-
    It is SO good to have answers.

    Take goos care.
    -R

  3. #3
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    Red Sox Nation :D
    Posts
    3,812

    Default

    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,
    ANN
    There comes a time when silence is betrayal.- MLK

  4. #4
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    9,150
    Blog Entries
    15

    Default

    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
    Posts
    1,877

    Default

    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
    Location
    SWOhio
    Posts
    3,549

    Default

    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

    Default

    Hi!

    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.

    lawnerd

Similar Threads

  1. finally Legal
    By houghchrst in forum Medicinal Cannabis Use & Issues (In Memory of "Grassman")
    Replies: 5
    Last Post: 08-13-2015, 01:45 PM
  2. CJD BLOOD SCREENING, DONORS, AND SILENT CARRIERS House of Commons Written Answers
    By flatfish in forum Creutzfeldt Jakobs Disease (CJD)
    Replies: 0
    Last Post: 05-19-2013, 06:19 PM
  3. Finally!!!
    By SalpalSally in forum Multiple Sclerosis
    Replies: 8
    Last Post: 05-08-2013, 07:45 PM
  4. Looking for answers - pain/pressure/post ETV surgery
    By sooner_in_pain in forum Arnold Chiari Malformation
    Replies: 0
    Last Post: 12-30-2012, 06:27 PM
  5. I'm 50 and FINALLY outgrowing ADHD
    By Callie in forum ADD & ADHD
    Replies: 0
    Last Post: 08-27-2011, 05:06 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.