Let's talk about MS

I'm pausing in telling the story of how Pepper came to be our dog...

I had a dear friend call me this weekend to talk to me about something she had come across that she was certain would help combat my MS.  Now, I have had someone tell me about a treatment, diet, or supplement that is supposed to be a cure at least once a month since I became sick two and a half years ago so I sometimes am not the most patient or gentle person any more when told of these amazing therapies.  I love this woman dearly and know she only has my best interest at heart so I had to step back before I responded. After explaining that I was very happy with my current treatment, she commented; "you know, you never read about people who are dealing with the disease successfully." and that got me thinking.  I haven't written much about my relationship with MS and when I started examining why, I realized that I didn't think I had much to tell.  I also think I felt guilty, like I wasn't sick enough to warrant telling my story; I have to really be suffering before I have anything worthwhile to say.  Then, I realized I was doing such a disservice to people who don't know much about the disease, or more importantly, may be newly diagnosed and are scared about what having MS in 2012 may mean.  MS treatment has come a long way and it no longer means a life certainly destined for a wheelchair, or worse.

I was "unofficially" diagnosed with Multiple Sclerosis in July of 2009.  I had been experiencing intense pain in my eyes and my husband made me go to the doctor - that morning.  Then my doctor got me an appointment with an ophthalmologist that same afternoon where I was diagnosed with optic neuritis.  I asked my ophthalmologist what caused that and she said, "well, usually, MS."  Um, what?  In the words of Vizzini from The Princess Bride, "Inconceivable!" I can't have MS and I walked down the stairs from her 2nd floor office, rather than take the elevator, as if that was going to prove I didn't have the disease.  My doctor got me in for an MRI the next day because I was leaving the next night to go to Las Vegas for the 4th of July weekend.  I learned that my MRI indicated "probable MS" while sitting in a Flamingo hotel room. Needless to say, I don't remember much else of that weekend.  I came back to Tucson and was given a referral for a neurologist who I could not get an appointment with until the end of August.  The end of August.  How on earth was I going to stay sane until the end of August? 

Unfortunately, I spent a lot of time researching Multiple Sclerosis on the internet while waiting for that appointment.  I read about diets, vitamin deficiencies and supplements, metal allergies, viruses, immunization reactions, stem cell research, CRAB drugs, blood brain barriers, remylination research, Big Pharma conspiracies, and so much more.  I have a friend who is a doctor and one of the first things he said to me when I told him my situation was, "stay off the internet."  Oh, how I wish I had taken his advice.  I was more confused and scared than ever.  I wanted to have some control over this and became convinced diet was the answer.  I went on a strict, no sugar, caffeine, gluten or processed foods diet and was adamant about following it.  I even ate salmon weekly (and I hate fish).  I lost 20 pounds in six weeks and yet I still felt terrible.  I was exhausted all the time; I felt drunk, dizzy, fuzzy and weak.  Was this how my life was going to be from now on?

The time for my neurologist appointment finally arrived.  KC and I went in and the doctor spent over an hour answering our questions and discussing treatments.  He told me I would have to have a lumbar puncture, a.k.a. spinal tap, in order to be 100% sure of the diagnosis.  Gulp.  Spinal tap?  I probably should mention that I had a horrible fear of needles.  I would feel faint whenever I had to have blood drawn or get a shot.  One time I passed out when I was having an IV put in.  The thought of having a giant needle inserted into my spine, literally, made me cry.  I'm happy to report that the procedure itself was a piece a cake, it was the days after while the hole in my spine was healing that were a bitch.  The results of the spinal tap made it official, I have MS.  That was in September, 2009.

My doctor initially prescribed Rebif for my treatment but my insurance company said, "sorry, she's taking Beta Seron."  I was mad.  All the drugs (available in 2009) are administered by injection but Rebif is taken every three days while Beta Seron is injected every other day.  I didn't know how I was going to be able to give myself a shot once, let alone every other day for possibly the rest of my life.  The thought was almost surreal and the irony that the thing I feared so much was going to be the thing that helped me was not lost on me. 

I began my treatment and I started to feel better, not nearly as tired and weak as I was, but my vision was still very impaired so I went on a three-day intravenous treatment.  I panicked when having the IV inserted the first day, but it got easier each day and more importantly, the treatment worked.  A short time after, my vision came back, almost completely.  Other than the occasional day, what I now refer to as 'an MS Day' when I feel exhausted or my equilibrium is off, I am flare free and have been since November, 2009.  I have responded to the medicine beautifully.  Except my body is not beautiful where I have injected myself.  I jokingly say I look like the Spotted Beast from the cartoon Maggie and the Spotted Beast because I have big red spots all over my bum, thighs, stomach, and arms.  But it is a small price to pay.  Speaking of small prices.... MS drugs are not.  I am fortunate and grateful that my husband has good insurance through his job.  Beta Seron would cost more than I make each month otherwise.  As I began to feel better, I got lazier about following my diet.  I am now convinced, since I was basically the guinea pig, that neither diet nor supplements are a substitute for my medication.  I have not noticed a difference when I change how I eat; at least not as far as the MS is concerned.

The pain from optic neuritis went away in a few days and I probably would have carried on without seeing the doctor, had my husband not actually dialed the phone to her office and handed me it and then driven me there for my appointment.  And my disease would have continued to progress unabated.  The gods intervened and I was given a diagnosis - crappy as it may be - and I was started on drug therapy that has slowed the MS; my last MRI showed no new damage.  So I can feel sorry for myself, which, to be fair, I did for a little while, or I can accept it, face it, take care of myself and be grateful that I am sick at a time when there is effective treatment and a hope for a cure in the future.  My ophthalmologist said something to me that put it in perspective when I went back for a follow-up visit after my first visit to the neurologist.  She told me that now I know what is wrong and I can begin to deal with it, so, deal with it. (My eye doctor is a very no-nonsense lady.)

So, in short, I have MS and it has changed my life, most definitely, but it has not ruined it.  Change can be good.  I have learned to not sweat the little things and to take better care of myself.  I appreciate my husband and friends more than ever and make a more concentrated effort to enjoy my children.  I do these things because Multiple Sclerosis came into my life.