Years and years…

I’ve been doing a lot of reading lately of how and when others are being diagnosed with MS. The story seems similar in every blog, post, or story: “I was diagnosed in (year) but I had symptoms for (x number of years) before that.

See, I was diagnosed with MS in August, 2014. Seven years earlier, I had a 2 week bout of optic neuritis. But because my MRI only showed one or two little ‘blips’ I was told it probably wasn’t MS and since subsequent MRIs didn’t light up, the diagnosis was dismissed despite several other periods of symptoms that all seemed to scream MS.

As a nurse and an education enthusiast, I love research. I’ve participated in studies on various topics, even being a subject in a vaccine trial for CMV in the early 90’s. I was a risk-taker but also believe research is critical to our well-being. I have an 11-year-old son with autism who also shares my adoration of research. While I don’t subject him to any clinical trial involving medications, he eagerly participates in many other studies for autism.

As I’m now a single mom to three kids, and my risk-taking is low to none, I appreciate those that are eager to try any and all of the new disease modifying drugs that are springing up. It’s certainly important and needed.

I think equally important would be time, money, and energy spent on early diagnosis for MS. With autism, my son was diagnosed before he was 2 and treatment started right after. His early diagnosis was the building block and foundation for the adolescent he has developed in to today- one that has come so very far and thriving.

How would things be different for all of us if we were successfully and accurately diagnosed after our first attack?

After struggling for seven years in varying amounts of the ‘unknown’ (fatigue, weakness, cognitive issues, etc) I subsequently was only diagnosed once an attack rendered me useless on the right side of my body and memory loss. I was diagnosed with Tumefactive MS and had some bleeding in to the very large lesions. “Typical” MSers have their lesions measured in millimeters, which even that seems huge. Now, multiply that so your lesions are measured in centimeters. Imagine the space in your brain these things must occupy. That’s mine.

Would things have turned out differently if I was diagnosed earlier and put on DMDs earlier? Maybe big pharm should spend some time on that, rather than flooding the market with more medication that may or may not give me more time between relapses, and may or may not cause horrendous side effects, and may or may not leave me worse than I am.

Let’s be PROactive instead of REactive…maybe the results will just surprise us.

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