Seeing as this is the inaugural post for #MSMonday, what better way to start off then where we all start, at diagnosis.
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.
Husband’s 2 Cents:
“I wasn’t around for your diagnosis, in the way I am today. We were just barely friends. Initially when you said you had MS, I did the same thing that everyone else does, I went ‘Ohh, that sucks’ but was thinking I had no clue what that was. I didn’t know if I should ask, or shouldn’t, but I ended up asking ‘What is that again?’. You gave me a pretty in-depth, but concise overview and I thought ‘Damn that sucks, this poor girl’. We were just hanging out as friends at that time, so I didn’t think about it that much after. When we started dating, I obviously started thinking about it and researching it. It seemed really scary to go through alone. I knew you had MS when we started dating and I never wanted to ‘get out of it’. It’s not fair to get out of it, it’s not fair you have it, so why would I do that. I’m not a fair weather boyfriend, when I care I care, and I’m loyal. I liked you before I knew what MS was and that you had it, so I decided I’d get your back and love you no matter what.”
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