I’ve just finished my pulled pork sandwich, an unexpected offering and leftover from our 4th of July gathering. Gulped some water and I am now ready to plunge into the meat (no pun) of my MS diagnosis story:
So from 1998-2005, my multiple sclerosis was a big mystery which eventually became dubbed “probable MS.” I had oligoclonal bands present in both of my spinal taps, I was positive for no other similar conditions or diseases, I had more than two nerve scars apparent on my MRIs (“multiple sclerosis”), and I had various telltale symptoms of the disease: intermittent weakness/numbness in my left leg and my right hand and forearm, “trick” bladder and bowel systems, muscle spasms in my left leg, some developing numbness and tingling in my torso, and balance issues with my left leg (I sometimes crashed into stuff on my left side.)
Shortly after we purchased our first home (spring of 2005), I was making a right turn out of our new neighborhood to get onto the main road. I glanced to my left and saw double. Not terrible, nauseating double vision, but just a slight doubling of everything towards my left-hand side. I rubbed my eyes because it was spring allergy time and I thought maybe I had a “misty” left eye. Not so.
I just remember going home and telling my husband about it, and I said aloud, “This has something to do with MS. It has to. It’s another freaky symptom.” I was very nervous and I called my parents first and told them what was going on. Then I called my primary neurologist’s office and at first they said I couldn’t get an appointment for 2 weeks. I lost it and yelled,” I have double $%&*!?# vision! Would you wait 2 weeks to see your doctor?!” So they got me in the next day.
My neurologist concurred that this was likely from multiple sclerosis. He again sent me for MRIs and had me schedule with an eye doctor. He also sent me to the emergency room to make sure the problem wasn’t something “acute”, which is code for a stroke or a brain tumor. I would have a CT scan, which is good at detecting such problems, but an MRI is more sensitive to the fine workings of the brain and spinal cord nerves and the scarring that happens during an MS attack.
On the way to the ER, Bill and I stopped to get some pizza because we knew how long an average ER visit lasted. The day was particularly hot, and I remember that my vision got so bad it completely doubled so that just looking straight ahead caused double vision, and only looking to the right stopped the problem. It is the understatement of the year to say that I was scared.
So my CT scan of course came back negative, and my MRIs showed a new, active lesion on my brain stem. I next headed to my mom’s eye doctor. He tested me, but could detect no immediate problems, but he admitted that he was a generalist. So he sent me to a specialist: a neuro-opthamologist. This is where I finally heard the words,” You definitely have multiple sclerosis.” This woman could see the damage to my 6th nerve going to my left eye (termed 6th nerve palsy.) She said this happens pretty much only to MS patients and diabetics. I definitely was not diabetic.
At this point my general neurologist sent me back to one of the specialists I had already seen. His team concurred with the MS diagnosis and asked if I would like to be in a clinical trial for two different MS medications. I would get more care and be closely monitored over a 2 year period. Sounded good to my mother and me.
I was not given any steroids at this point and had to wait out the double vision for its duration: 7 weeks. At this time I did not know that I could have had the steroid therapy and shortened the attack. I followed what the MS specialists said and started the study, taking Betaseron injections every other day. My best comments about this study are that I have taken Betaseron for 3 years, it works well for me, and it has probably contributed to a recent 2 year period of being relapse-free. My worst comments will come forth as more of the story unfolds.
