Beth's Patient Perspective
Beth's Companion Perspective: Casey



Beth's Patient Persepctive

My name is Beth.  My story is short.  I am 46 years old.  February 16, 2009 my hands and abdomen went numb, just a little.  I thought I had overdone a painting project I was working on, so I quit painting.  My symptoms grew and grew in severity and number.  May 5, 2009 after many trips to doctors and a hospital stay, I had a name for it, atypical MS.  My symptoms did decline in severity, but not what I thought a remission would be.  I was lucky, sort of.  My disease was invisible.  If only I could have stayed awake and hidden the discomfort, I should have been able to carry on.  It was a very confusing time.  I was not able to function. People around me didn’t understand why I wasn’t functioning, and I was unwilling to share with family and friends just how steep the slope I was slipping down was.  I lied, thinking it was no use worrying others since no one could help.  This was probably not the best strategy, but it was the one I was the most comfortable with.

I stumbled onto a thread on the swankmsdiet.org website that asked “What if MS is a vascular disease?”  I opened it, never guessing I would be making one of the most important discoveries of my life.  I knew immediately that this was what was wrong with me.  I read for days at ThisisMS.com.  I reread what I had read, because I couldn’t get the name or the idea to stick in my fuzzy little brain.  My husband was supportive from the beginning.  I am not sure about the rest of my family, but it didn’t matter.  I was going.

I was patient number 40 of Dr. Dake’s at Stanford University.  That was November 10, 2009.  My procedure recovery was easier than many.  I have one stent in my lower, left jugular.  I left the hospital and visited with another patient and his wife at the hotel pool.  I was tired and had an uncomfortable neck.  My daughter and I stayed the few days we had planned for recovery.  We walked the campus and downtown Palo Alto.  I was tired, but I was noticing changes already.  My words were flowing, even big ones.  I wasn’t forgetting what I was talking about mid-sentence.  The word finding problems were nonexistent.  I wasn’t slurring.  I could even talk fast.  It was strange.  When the hotel bill was slipped under the door, I read it.  Of course I could always read, but before the procedure it would have been a chore to evaluate the list of charges and such.  Now it was effortless.

I went home and rested.  The clear brain thing was super crazy and apparent, especially when I was back in familiar surroundings.  I helped my sixth grader with math!  Not hard math, but tedious, time consuming math.  For the months before this, homework help was always pushed to my oldest.  I talked on the phone, and I talked quickly and clearly, even a little too quickly sometimes.  A few things came out that shouldn’t  have.  I wasn’t used to things just flowing out.

Now, I am really close to ‘normal’.  My fatigue is pretty much gone.  My brain fog is gone.  The discomfort in my neck and side (from the procedure) only shows itself after a very full day and even then, it is only a small fraction of what it was.  My urgency is gone.  My swallowing is much better.  The Lhermitte’s sign is gone.  My hands are still numb, but to a lesser degree, and still become swollen, but recover much more quickly.   The numbness across my knees is gone.  The nightly arm tremors are gone.  My word slurring, word-finding trouble, and trouble remembering what I was about to say are all gone.  Those are the symptoms, but the really great part is that now I don’t think about my MS very much, and I make plans.  I make plans without even thinking twice, or wondering if I will be able to keep my plans.  I really do feel liberated.

My hope is that this gives anyone investigating treatments hope.  When I learned of this treatment and I suddenly had hope, my life became brighter again.  I want that for everyone with MS.

Beth's Companion Perspective: Casey

I’m Casey; I am 17 and a junior in high school.  My mom and I were especially close and always spent time together, until my mom’s MS symptoms began to appear.   In February 2009, my mom started to get more tired than usual.  We all assumed it was because she was overworking herself due to our family moving.  But even after the move, she began to pull back and spend more time alone than with the family.  My brothers and I had to adjust to having our mom around less, and not being able to go out as often.  In the beginning, we thought this would pass.  But when it didn’t, I started to become frustrated and hurt thinking that my mom didn’t want to spend time with us.  I confronted her about why she had changed so much and why she wasn’t there anymore.  Once we started talking, I fully understood what she was going through for the first time.  She explained to me the pain she was in and how scared she was of not knowing what was wrong.  Soon after that conversation, my mom was admitted to the hospital and then later diagnosed with Multiple Sclerosis in April of 2009. 

After the diagnosis things were still bad, but there seemed to be a new sense of determination in my mom.  I began to research MS and tried my best to learn more about it so that I could try to understand what she was feeling.  The information I found gave me understanding, but also created a lot of fear. 

California preparing for her procedure.  Within hours of the procedure I could tell she was clearer and seemed happier than I had seen her in a long time.  And within days you could tell it was real- she was getting better.  By the time we were home, she was able to do things that she hadn’t been able to do since February, like turning a door knob or slicing vegetables without wincing.  My relationship with my mom is back to normal, we spend more time together now than before this all began, and we have even more fun.  My brothers and I got my mom back, and it is definitely thanks to the CCSVI intervention.