In the summer of 2002, I was visiting home from college.  My friends and I had a vacation planned – and we were set to drive to Myrtle Beach. I woke up two days before the trip and went to work. I had a dull pain behind my right eye along with decreased vision. I thought I may have had an eye infection, or perhaps staring at my computer screen every day was finally taking its toll and I needed glasses. 

I was one of the drivers for our trip, so I decided to leave work early and go to the eye doctor.  I had never been to an optometrist, having 20/20 vision my entire life.  I called my mother, because that’s the first person I call when I need anything. Mom gave me the number for her eye doctor and luckily they  had an opening that afternoon.

I arrived at the office not thinking much of it, little did I know my life was about to change forever. I remember being aggravated; they kept running panels of tests on my eyes, and the appointment was taking a very long time. I kept thinking: I have  a trip planned, let's go!

Finally, a nurse entered the room and asked if I had anyone with me.  When I said ‘no’, she suggested I  call a family member. I was a healthy kid at the time, I didn’t even think to ask why? First call: Mom. Wait, no . She’s at work, dammit!  Next call - Dad.

‘Hi Dad, can you meet me at the optometrist? They are asking for a family member to come down. In pure Dad fashion, he arrived within minutes.  Once there, they told us that they suspected that I had MS and that I needed to go to Stony Brook Hospital to see a neuro-opthalmogist.

I had heard of MS, but really didn’t know anything about it. I felt fine, and my eye was just a little cloudy, no big deal, right?? We immediately went to  the hospital, after the MRI, it was confirmed that I had Multiple Sclerosis. 
Even after hearing the confirmed diagnosis, I still did not know what this really meant and I certainly did not understand the severity of the disease.  At the time, as a 21 year old college student, all I was worried about was possibly missing my vacation. 

An amazing neurologist spoke with me and delivered lot of information - and a lot of hope. She told me to go on vacation. Obviously, I could not drive because my vision was 20/80 from the optic neuritis, so I found my way to meet my friends a few days later.  

Multiple Sclerosis (MS) is a, often silent, cruel and progressively debilitating disease of the central nervous system in which your body's immune system attacks itself.  MS attacks the brain and spine, specifically the protective myelin sheath that surrounds the nerves.  Without this protective nerve coating, the signals that your brain sends are interrupted, resulting in a host of life altering problems that can affect walking, sensation, mental clarity, speech, sleep, and overall bodily function – basically every action, movement and feeling involved in daily life.

The fatigue I feel on a daily basis from MS is incomprehensible to a healthy person.  You know that mid-day wave of exhaustion than you get on the regular? That phase of extreme exhaustion is how I feel from the moment I wake up until I go to bed each night. 

I live a very healthy lifestyle: nutrition, whole foods, supplements that are safe for me (based off of my treatment), an attempt to sleep well, and activities to reduce my stress are all part of my daily regimen.

Since 2002, I've been on 5 different drugs to treat MS.  All of the drugs have one thing in common: they attempt to 'slow down' the progression of the disease.  None of the drugs intend to halt the progression or improve the disability; the intent is to slow it down. Relapses are what trigger the need to try a new drug. Over time, and in my case, each relapse has advanced my disability. I am at a critical point right now.  If I don’t act soon, a realistic fear is that I will lose my my precious ability to walk and most importantly - not be able to take care of my 5 year old daughter, Charlotte.  A thought and source of anxiety that haunts me everyday.

Now -  the good stuff!

Two years ago, I read an article about HSCT - Hematopoietic Stem Cell Transplant. A procedure used traditionally for various terminal diseases, and now being used for the treatment of MS. Knowing that chemo combined with stem cells has been one of the standard treatments for cancer patients for decades, this was incredibly exciting news.

Research has been a part of my experience with MS. I find a great deal of hope reading about new treatments and reading about other patients who find relief.  As I began my research into HSCT specifically, I grew really excited. It was initially thought by many that this very aggressive approach was for patients with much more advanced forms of the disease.  Luckily, since then researchers have come to a different conclusion.  Researchers and Doctors now believe that the earlier  into your diagnosis that you can undergo HSCT, the better! HSCT has been proven to be successful in stopping MS in its tracks.  Waiting until experiencing an advanced disability caused by MS renders HSCT less effective. Acting soon to halt the MS before permanent, crippling damage is done is key. MS is a one way street. Once damage is done, it's almost impossible to reverse.

The science behind HSCT is to essentially 'reboot' your immune system, sort of like hitting a reset button.  It is a one-two punch, the chemotherapy completely wipes out the faulty immune system of an MS patient and then when infused with healthy stem cells that have no memory whatsoever of MS, the brain learns to act differently.  Patients are able to grow a new, disease-free immune system.  There have been ongoing clinical trials in the US for 10 to 15 years and the results are truly stunning. The studies have shown that HSCT is able to completely halt disease progression in 86%+ of patients. A large percentage of patients also experience symptomatic improvements.  Many patients have stated fatigue being the first symptom to improve!

I have talked to my team of doctors, contracted second opinions and have done all of my due diligence. Through all of this my doctors and I have found that I am a great candidate for this treatment.  And the likelihood for me to experience complete remission and reversal of most of my symptoms could be as high as 90%!  In the US, they measure disability by an EDSS score (1 to 10, with ten being completely bed ridden and requiring 24hr care).  As of now, my EDSS is a 3.5 so I'm in a good spot to have this transplant, BUT, I don't have time to wait before things get really bad.

I have found a great hospital and medical team that has treated nearly 1,000 MS patients with HSCT.  They have an outstanding safety record and are willing to accept my case. I cannot stress the sense of urgency to have this transplant sooner rather than later as my odds for getting better will remain on the high end. I really do believe this treatment will eventually be the standard of care for MS.

Unfortunately, we are 5 to 10 years away from seeing HSCT as the first line of treatment for MS patients in the US.  Because of this, I am faced with having to pay for HSCT out of pocket. My team of Doctors and I believe that if I wait for the trials to be over and then for FDA approval, it could be too late for me.

MS has changed my life forever and I am hoping for HSCT to change it for the better.