Being diagnosed with MS is not like being diagnosed with most other things. It isn’t a one time doctor visit, a one time conversation and a black-and-white, yes or no answer. It is usually a long journey of tests, explaining of symptoms (usually symptoms that you can’t explain), and trying to put puzzle pieces together to understand what is going on in your body.  There’s blood tests, lumbar punctures and MRI’s that we go through to try to make sense of the oddities that are occurring.

After you said your story at least a dozen times, and to at least a dozen different doctors, you may get that answer(s) you’ve been looking for. Not because you want a diagnosis of anything, but because you want an answer, a direction, something (anything) to do that might help.

But as is the case with early MS, A diagnosis of Clinically Isolated Syndrome might be given instead.  Clinically Isolated Syndrome (CIS) is that unfortunate state of ‘is it, or is it not’ limbo that many people with MS find themselves in prior to a full MS diagnosis. CIS is diagnosed when an individual has symptoms that are consistent with a diagnosis of MS, but they’ve only had one symptom present. In order to receive a full MS diagnosis, more than one symptom needs to be experienced.

I was considered to have CIS for almost a year prior to my full MS diagnosis. This left me wondering when I was going to get that ‘full diagnosis’ and every doctors appointment. Will this be the time?’ I would wonder. ‘Do I have it now?’ It drove me nuts. After changes on my MRI I moved from CIS to MS. Something I knew that would eventually happen, I just didn’t know exactly when.

Being diagnosed with MS may happen suddenly, or maybe gradual over several years. But regardless of the speed it’s still a painful and exhausting process, both physically and mentally. One that is full of confusion, questions and few answers.