Discovering MS

Life can often throw unexpected twists and turns in the road...

About two and a half years ago I went to a neurologist about getting a medication for migraines.  I've had migraines since I was about 6 years old, but it seemed like after Eliza was born, they became more frequent.  I was getting migraines that would rebound and occur multiple times in a week, which is very difficult to manage when you have a baby and toddler to take care of.  The neurologist sent me for a number of tests, one of which was an MRI to see if there were any unknown problems contributing to my headaches.

When the doctor called me and told me I had multiple lesions in my brain and probably had Multiple Sclerosis, I was incredulous.  I've never had any problems except migraines, and I certainly wasn't about to jump into a "probable" diagnosis.  Doctors are often wrong.

I decided to get a second opinion.  It took me a long time before I finally set up the appointment.  I spent a lot of time thinking and a lot of time researching.  I found out that migraines can cause lesions in the brain too, and I was optimistic that this doctor would tell me that the MRI was a reflection of years of migraines.  She looked at the MRI results and recommended that I see a neurologist specializing in MS.  I was becoming less optimistic.

The third neurologist showed me the films from the MRI and talked to me about what it meant.  She showed me the lesions on the films and explained that those type of lesions weren't caused by migraines.  The lesions were unrelated to my migraines, and likely caused by MS.  This was a separate problem uncovered in my pursuit of finding a better migraine medication.  At that point, I was barely pregnant with Spencer and couldn't have any more tests done to make a definitive diagnosis.  She told me to wait until after he was born and have another MRI done.

I've had several MRI's over the past couple of months and have visited the doctor once already.  Although hopeful, I had a suspicion that the answer was not going to be much different than it had been in the past, and it wasn't.  I have another doctor's visit to review a few other tests in the near future, but the diagnosis is unlikely to change.  At this point, it's mostly benchmarking where I am to measure how the disease progresses in the future.

It has been a long time since I first heard the news, and I've been on an emotional roller coaster for the past two and a half years.   I've had moments of complete denial, and moments where I break down thinking of the worst possible scenarios.  I've had optimistic days, and days where my whole future crumbles, and I cry myself to sleep.  The hardest part was and is the unknown.  I didn't know much about the disease except what I have heard from other people, and a lot of it can be quite alarming.  I will post more about disease in time, but for now I will just say that there is such a wide range of disability that can come from MS, that there is no way to know what parts of my body will be affected, if affected at all, or when that may come.

I'm still learning about the disease and thinking differently about my mind and body and about life in general.  I look back and wonder if an episode of vertigo was really low blood pressure, or if my head being in a fog was really being overly tired or stressed.  I wonder if my inability to process too much information at once is just a short-coming shared by many people, or a real physical limitation.  How long have I had this and how has it manifested itself - if at all?  And then I wonder, does it really matter?

Ultimately, what this means for me in the short term is that I have to start taking a medication for MS as soon as I'm done nursing Spencer.  It will probably be a shot I give myself every day, and it is supposed to reduce the symptoms of MS by about 35%, which is the best that they've got at this point.  I'm not thrilled at the idea of giving myself a shot everyday, especially since there are often undesirable side effects, but I will take that over a wheel chair in 10 years.

I know I've spoken with many of you about this already, but I haven't spoken with everyone or given all of the details.  It's been difficult for me to swallow the reality of this diagnosis, and difficult for me to recount it.  My intention is not to hide it or pretend it isn't there, but I also don't want it to become a disproportionate focus in my life.  Right now, I don't have any significant physical or cognitive problems, it has been the emotional aspect that has been most challenging.  It's not really something you plan on or prepare for.  I am so grateful for my dear family and closest friends for their love, support, and prayers.  I know no one can fix it or take it away, but feeling cared about, loved, and prayed for sure helps the emotional burden seem a little lighter.

I know before I was born I agreed to come to this earth with all of its problems and physical limitations.  I knew my life would have trials, and I still chose to come because I knew with God's help, I would come out better for it.