My MS Story

As you may know, I was diagnosed with multiple sclerosis (MS) in October...October 9th, 2007 to be exact. I'm going to use this post to explain what led to that diagnosis and let you know what I'm doing about it and how I am - since many of you have asked or are afraid to ask. Sorry, but it's a long post.

It all started when I got off a plane after our honeymoon 2005. I thought I slept weird on the plane, because every time I put my chin to my chest, I would get this odd vibration/sensation down my back, arms, and into my legs. It didn't hurt...it was just odd. I went to my PCP for a check up and mentioned it to him and he just said, "Just stop putting your chin to your chest." It lasted about a month and then went away and forgot all about it.

In March of 2007 I lost vision in my right eye. It was kind of a mix between blurriness and parts of vision in that eye completely gone (they call that a scotoma). I went to an optometrist, ophthalmologist, and a retina specialist and received healthy eye exams. My PCP ordered an MRI of my brian which showed a tiny lesion (pretty much every Neurologist who has reviewed my film cannot find it though). I went to an amazing neuro ophthalmologist at Wills Eye and after the most thorough eye exam and review of my MRI, he diagnosed me with optic neuritis (swelling of the optic nerve). He explained that patients who present optic neuritis are at increased risk of MS, but he said he couldn't make a diagnosis at that time. He explained that my vision would continue to improve but may never heal completely. He was right - when I returned in May 2007, my eye exam showed 20/20 vision in my right eye. While it appears perfect on paper, my right eye isn't the same, but I can see fine.

In August 2007, the right side of my head and face went numb with pins and needles. Now, if you go online and search "loss of vision" or "facial numbness," MS is pretty much the diagnosis you would find. At this point, I went back to my PCP and got another MRI - showed no change from before. I also went back to my neuro ophthalmologist - who couldn't find anything.

I was glued to the computer...on MS chat rooms, searching content on MS and trying to find an answer. After all this, I stumbled on a symptom of MS that I never heard of, "Lhermittes sign" which describes the vibration sensation when you put your chin to your chest. I remembered that sensation back in 2005.

September I saw a neurologist. He did a complete physical work up, reviewed my MRIs, asked all the right questions and couldn't provide a diagnosis. He recommended I get an MRI of my cervical spine and thoracic spine due to my symptom a while back of Lhermittes. As you may have guessed, the MRI showed two old lesions and at that point my neurologist could provide a confident diagnosis of relapsing/remitting MS (most popular and less serious type). I ended up seeing the best of the best MS specialists in Philadelphia for a second and third opinion and they both confidently agreed with my neurologist.

So...what does this all mean. I started medication (Rebif) which is a self injection I inject three times a week at home. The medication has been proven to basically decrease relapses and chance for disability. It really doesn't hurt to inject and I fortunately haven't had the side effect of "flu-like symptoms." My neurologist has told me I should plan on living my life as I always have, but to avoid heat/cold temperatures as that aggravates symptoms. What that means is those minor residual symptoms from my eye and my face seem to get exacerbated when I'm out in the cold/heat - but then it gets better. No big deal at all.

I'd be lying if I said that I haven't been scared or sad...scared cause this disease is unpredictable and sad cause no one wants to have a disease in which the perception is that you end up in a wheel chair and have some other crappy symptoms. But I'm past all that because I have the most supportive husband (who came with me to every doctor appointment), I have supportive friends and family, and the medication that I am taking has proven to be successful for many people. I plan to be one of many who will change the way people perceive this disease because I expect to not have any more relapses. I feel great and I choose to be positive and hope you are too.

If you have any questions or want to know more, I'm an open book so just ask.