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  • Mary_Ann_C

    The weekend of April 28 - never forget it.  I had been having some double vision and difficulty urinating.  Made two appointments; one with eye doctor and one with internist.  Thought I needed a new prescription and maybe had a UTI.  Eye doctor found esotropia in left eye and referred me to neuro opthalmologist.  UTI negative.  That Friday night, I was hit with a horrific weakness and severe blurred vision that sent me to the ER.  They did a CT scan and it was normal ... they sent me home.  I was having a very hard time urinating.  Saturday early morning I was able to urinate; symptoms worsened.  I went to the ER again, this time going the 60 miles to the ER my primary uses.  MRI done; normal...sent home.  Had not urinated since early that morning.  Sunday back to the ER in my town because I still had not been able to use the bathroom ... was in terrible pain.  They catheterized me and got 2 liters of urine from my bladder.  By then I was having twitches and muscle cramps/spasms in my feet and calves.  The ER doctor immediately thought MS.  I was admitted.  ANOTHER MRI done ... normal.  Symptoms improved over 5 days except I still could not urinate.  Sent home with catheter.

    Failed many tries at bladder training/urinating.  Finally urodynamics was done.  Showed neurogenic bladder.  Have been taught to self-cath.  Neuro-opthalmologist found RAPD optic neuropathy in my RIGHT eye (believes esotropia in left eye is unrelated).  Did a test for Devics (NMO), ANA and ACE.  All came back normal.  In the meantime, "twitching" began again.  This is roughly 6 weeks from the April 28 incident.  Vision blurred; left eye turned farther in towards nose.  Also had three falls.  Called neuro-opth. and he had me come back in.  He had already referred me to an MS specialist.  I have not seen her yet ... will see her on Tuesday.  In meantime, brain and orbits MRI done yesterday ... neuro-opth. read them and said normal.  Today they do full spine.  I have had 3 surgeries and a fusion and need a 4th surgery but Mayo evaluated and said no, too dangerous.  

    Still having "twitching".  Not so bad when I first wake up.  Worsens as the day goes on.  Also some strange numbness ... bottom of feet under toes.  When shaving yesterday, I noticed that as I moved the razor up my left leg, I felt a "zap" in the top of my foot.  Numbness on the side of my right hand (down pinky finger, etc.) for about a week.  General pain, and fatigue is awful.  Also chronic nausea.  And chronic thirst, but diabetes was ruled out at Mayo.

    Got reports from neurologist in Memphis from 1998.  Interesting what you forget.  Had seizure problem which was attributed to clotting disorder they discovered called Factor V Leiden.  Given Neurontin and Topamax and blood thinner since ... no seizures since 1999.  Also had been told I had a stroke when I had lost vision, but in notes it says "bilateral optic neuropathy".  Also had forgotten an isolated episode of dystonia ... I remember now horrible cramps.  I thought is was low potassium or something.  In notes I had also reported difficulty urinating.  And doctor noted I could not stay on topic.  Also history of migraines.

    All of that had resolved until April.  Today, vertigo has hit with a vengeance.  Nauseatingly swimming/spinning.  In top/front of head.  I have had some light-headedness since end of April but nothing like this!

    So now MRI with contrast in a Tesla 3 is coming back normal.  I am either losing my mind or something is wrong that they are missing.  

    Any help?  Ideas?  

    Thanks so much.  I have a 10 year old daughter and husband and they need Mommy back.

    Update --- went to MS specialist --- brain MRI showed a lesion but right now she is more concerned with spinal cord compression and need for surgery than she is possible MS.  Does she have priorities right?!?

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    Yipes Mary Ann,

    I am not sure what to tell you.  You have had your unfair share of symptoms. Obviously neurological.  You definitely need to do something about the compression or some of those symptoms you are describing will just continue to get worse.  But why can't the neurologist start you on some sort of therapy for the MS while you are prepping for surgery?  If there is a lesion, then it's highly suspect for MS.  But your neurologist should know what's best.  Hang in there.  Let your support system know what's going on, but try and spare the little one too much about the scary stuff.  My daughter started asking everyone when I was going to die when I said too much around her.  Let yours know you are there and won't be leaving.  But allow the supportive adults in your life know what you need.  That's the funny thing about those of us with MS; we think that keeping it to ourselves helps our loved ones, but it just scares and worries them.  Mary Ann, this has been a process for you and I wish it were close to being over and you had all the answers you need, but I am afraid you will need to go through a few more steps before you find the resolution you seek.  Be strong.  You can do this.
  • Ambushed1
    I had a birth defect in my neck,  had surgery 2 yrs ago, it helped alot.  I went to work  f/t but sprained both wrists.  Found different work not factory.  Diag. in May this yr.  I go to MS specialist for Optic Nuritis, (blurred vision, head ache on left side, vertigo) sound familiar?  MRI showed leisions on brain & 1 on spine.  I go for Occipational Therapy evaluation in December.  Keep looking for an MS specialist in your area, an MRI will be the started point. 
    I have been on copaxone for 3 yrs, no side effects, no flare ups since then.  No fun having to shoot up daily, but i am now use to it.  It is worth it.  Good Luck.  If surgery is suggested go for it. 
  • Lilmilsap
    Goodness! I'm sorry you have gone through all that! You are a trooper for putting up with all that...If they say you have had a stroke in the past, strokes cause lesions.  And a reminder: MS is VERY hard to Dx. I really hope they find out soon whats goin on, so they can start treating it. good luck to you
  • ahgranny
    HAVE YOU HAD A SPINAL TAP AND FLUID SENT TO ONE OF THREE LABS IN US WHO DO TEST FOR MS. THAT'S HOW I GOT A POSITIVE DIAGNOSIS.TOOK TWO WEEKS FOR RESULTS .WAS ABLE TO START MEDS. NINE YEARS DOING GREAT WITH MS.DON'T GIVE UP.IT'S YOUR LIFE,FIGHT EVERYONE FOR IT.goodcook
  • fromptok
    HAVE YOU HAD A SPINAL TAP AND FLUID SENT TO ONE OF THREE LABS IN US WHO DO TEST FOR MS. THAT'S HOW I GOT A POSITIVE DIAGNOSIS.TOOK TWO WEEKS FOR RESULTS .WAS ABLE TO START MEDS. NINE YEARS DOING GREAT WITH MS.DON'T GIVE UP.IT'S YOUR LIFE,FIGHT EVERYONE FOR IT.goodcook
    So a reading from the radiologist where the spinal tap was performed is not sufficient?
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