Hello,
My name is Jim Hunt.  I am currently 46 years old.  I was diagnosed with MS (multiple sclerosis) in Sept.  2004.  Most people tell me today that I look great.  What they can’t see is the damage on the inside.  MS is a very frustrating disease to have.  Experts say that MS doesn’t kill us.  It dramatically changes the way we live.  Oh by the way, there is no cure for MS.
It was a beautiful summer day out at Ship Island.  I was playing in the surf and thought I had gotten something in my left eye.  It was uncomfortable with a little bit of pain.  I flushed it out with some bottled water.  On the way back home it became more painful.  On Monday, I called and set an appointment to visit an ophthalmologist.  The doctor gave me some eye drops.  The drops didn’t help any.  My vision became very blurry in my left eye.  Feeling that I was misdiagnosed, I saw a different eye doctor.  No better results after a week or two.  I had now begun to feel extremely tired all of the time.  I thought it was due to the stresses of work.
I then went and visited my primary care physician.  He ordered a CAT scan.  No negative results were found.  I had been feeling rather depressed for a long time.  So my physician put me on an antidepressant.  My eye continued to bother me.  I sought out another ophthalmologist.  This doctor sent me to a retinal specialist.  The specialist ordered an MRI.  The MRI showed lesions on my brain. I got very scared.  I thought I may have a tumor in my brain.  At this time one of my physician friends got me an appointment with a neurologist.
This neurologist ordered another MRI.  He also did a spinal tap on me.  Having a long needle inserted in your spine is not cool.  After reviewing the test results, doc diagnosed me with multiple sclerosis.  I was petrified.  Not knowing what MS was I thought that I would be one of Jerry’s kids (MD).   He then sent me to Houston to see a MS specialist at the University of South West Texas.  The Texas doctor confirmed my diagnosis.
I was employed as a pharmaceutical representative at the time.  Pharmaceutical is an extremely stressful job.  The pharmaceutical industry started having head count reductions every year during the fourth quarter.  This seemed to always happen right before Christmas.  My doctor told me to avoid stress.  Stress is not good for patients with MS.  How do I avoid stress?  Part of the reason I mention my vocation in pharmaceuticals is the knowledge that I gained about health care providers.  It became very evident to me that my original neurologist didn’t care about patients as much as he did about his salary.    He put me on a once per day injectible med.  After several months of therapy and new lesions on another MRI, he switched me to another injectible med.  This second medicine caused me horrible side effects.
With the lack of compassion and feeling so down all the time, I quit going to the neurologist.   After several months my family urged me to seek out another neurologist.  So, I did decide to see another neurologist.  This doctor was a total whacko.  Almost every time I would go to her office, she would have a completely new staff.  Huh?  Interesting.  She seemed to have a lot of personal issues herself.  She was adamant about starting me on a new once per month injectible therapy that was just approved by the FDA.  As I had been reading about this new drug, I expressed to her that I didn’t want to be on that drug.  There were several deaths related to this product.  I didn’t want to put myself in harms way.  She told me that “If I didn’t take this new drug that I would be in a wheelchair within 6 months.”  What do you do when the doctor tells you something like this?   She said we are in this together.  Please call me if you have any problems.  Well, I started the treatment.  Within one week, I was having chest pains and other problems that were clearly stated in the product information sheet under adverse events.  When I called her office, I got no return phone calls from her.  I went to see a cardiologist friend of mine.  Fortunately, my heart was okay.  I fired her.   So now I’m back to not trusting neurologists again.  Oh by the way she isn’t practicing medicine any more.  Do your think that she was getting paid by the drug company?  Perhaps, seen it before.  Remember, I worked in the pharmaceutical industry for several years.
I then contacted the doctor from Texas.  He referred me to a physician in New Orleans.  I have been seeing the physician in New Orleans ever since.  You really have to be your own patient advocate.  Do your own research.  Ask lots of questions when you visit with your health care provider.
I have had numbness and tingling in my extremities from time to time.  I have days when I don’t see very well.  I stumble a lot and had a nasty fall in the shower a couple of months ago.  I don’t remember things very well anymore.  Fatigue is my constant companion most days.  I make myself go to the gym and get some exercise a couple of days per week.  I’ve found that the exercise is very important to my well being.
So, I have been on almost every drug approved by the FDA.  The ABC’s as they’re called _ Avonex, Copaxone, not BetaSeron.  I’ve also taken Tysabri (causes PML).  I’ve developed antibodies to Tysabri.  Now I can’t take it anymore (whacko doctor put me on).   I took Novantrone (chemo), and am now on Gilenya (first oral med – FDA approved).  During these past few years, I have also been on steroids a few times.  IV Solumedrol and Prednisone.  I lost the hearing my right ear for a week one time years ago.  Steroids cleared this up.  I am able to hear okay.  I did recently have that numbing feeling return to my right ear and had ringing in my ear for a few days.  I took Prednisone for a few days and my hearing returned.
I went on disability in the spring of 2012.  There was another head count reduction at work last fall.  I would have been laid off of work had I stayed.  I didn’t know this layoff would occur, but suspected it would in the near future.  I wasn’t able to function well at work any longer.
I have a MRI done about every 6 months now.  My current medication appears to be working fairly well.  Two of the last three MRIs showed no new activity. The MRI six months ago showed a new lesion in my spine.  I just had another MRI this week.  So, hopefully no new lesions.  If there is new activity then I will start taking something else.  I have felt like a lab rat for so long now.
I am trying to stay active with the MS Gulf Coast MS Society and drive awareness in our community. Thanks to lots of prayers, I’m doing okay.  I may have MS, but MS doesn’t have me.  I will continue to reach out to our community.  I firmly believe that the reason I am doing well is to be able to spread the message about multiple sclerosis.  I have relationships with lots of health care providers.  I will work to forge ahead and bring much needed resources to those afflicted with this disease.  By making others aware, we can and will beat this disease.

Jim Hunt – Mississippi Gulf Coast