I’ve already briefly touched on some symptoms I experienced which led me to eventually see my GP. What I didn’t do but will focus on now, are the details and next steps leading up to and after my diagnosis. I have read that there are 13-ish conditions that mimic MS. If this is the case, how do we know? How does my doctor know for sure? Great questions! It is very important to be accurately diagnosed, this means seeing more than just your GP and at LEAST having a brain and spine MRI. If the MRIs are inconclusive, some doctors may opt to do the lumbar test just to be sure. My MS specialist said my MRIs were “textbook MS”. I asked how he knew for sure it was MS after learning of misdiagnosis and the other conditions that mimic MS. “Well, although you have symptoms that are consistent with other conditions, those conditions do not always show lesions on the brain and spine. You have lesions on the brain and spine, and where they are located is consistent with MS. If they were located here or nonexistent, we may be looking at a different condition”, my doctor explained. Not word for word but you catch my drift!
I will discuss steps I took before my diagnosis and then outline the other conditions, which I have read, can mimic MS symptoms. When I finally went to the doctor’s and explained the numbness and other things I had been feeling, my doctor sent me for blood work, testing my vitamin D and B levels, hormone levels etc. I had a requisition about 2 pages long! Aside from this, we did a few tests in his office that tested my reflexes, my balance, my strength and my sensations (ie- I would tell him if something was “sharp or dull”). My doctor explained that just as a precaution, he was also going to order a spine AND brain MRI to see if there is anything going on inside that we can’t see. Thankfully, I have an amazing doctor who looks at all possibilities before placing a title on something.
I had my spine MRI done first and my brain MRI was to follow in about 2-3 weeks. In the meantime, my doctor called me in after my first MRI came back and he said something along the lines of “I am going to put you in touch with a neurologist to have a look at these as well. There is no cause of major concern as we still don’t have your brain MRI yet but, I am not a neurologist and as much as I can understand MRIs I would prefer you see a specialist as well”. I left the office thinking, great! I love how thorough my doctor is- there will be no room for misdiagnosis and a specialist will be looking at the images, I am on the right track!
It was time for my brain scan so I took my Lorazapam (I don’t do small spaces or the feeling of not being able to move freely haha), and away we went! Two weeks later, on a Saturday, my phone rings and it’s my doctor. I held my phone in my hand starring at the screen and just stood there. A few minutes later, my parents called me… “Doctor just called, he asked that we ask you to call him back” At first I thought if he is calling on the weekend this must be BAD but my doctor also knew I was anxious to learn of what was going on and he’s very old school when it comes to things like that, he even makes house calls! I took a deep breath and I called him back….. “Ashley, it looks to be MS but I don’t want you to worry, you will still see the neurologist to be sure, and if he confirms the diagnosis, know that there are new drugs that come out every year, so much new research and findings have happened since we first started learning about MS. This is not the end, I promise you. You will see the neurologist in 2 weeks and he can have a look as well and we will see what he thinks”. I thanked him for calling and telling me rather than making me wait and wonder longer than I needed to. I hung up, called my Mom and very calmly said, “The doctor thinks it’s MS but he said to be sure, he wants me to see a neurologist”. OK! We will do that, just because he thinks its MS doesn’t mean it is, my Mom reiterated in that reassuring positive voice that only Mom’s have when they are trying to reassure their kids that they will be ok.
Next was my boyfriend. I called my boyfriend and told him what the doctor said, like most guys, he told me not to worry, he was sure everything was fine and asked if I wanted him to come home. I assured him I was ok and I carried on with my day. The next 2 weeks were about to be the be the longest weeks of my life! I was eager to know what was going on and for a true diagnosis so that I could start to figure out what I needed to do for a health plan.
To be continued…..