MSDiagnosed….9 years later

Hello all! It’s been over 6 months since I said I would start doing this more frequently. I read the last post about our visit to Wolf Trap and to be honest, that whole day had escaped my mind. I’m writing today because a lot has changed and I made a commitment to keep people informed. Gary was diagnosed almost 10 years ago, now. Often, people hear me speak about my frustration around the time and effort it took to receive the correct diagnosis. Almost 3 years, a whole residency of docs (seemed like) and a slew of misdiagnosis that we kept trying to fix. When he received confirmation of MS, on his birthday in 2010, it was somewhat of a relief. We knew what was wrong and started learning what to do. But life is funny, right? After years of mediocre care (in my opinion), Gary was denied medication in December 2018 due to prior-authorization issues. After much activity (too much to describe), we saw a new doctor in the spring of 2019 who said, “I think you have progressed into Secondary Progressive MS, but I want you to see a real MS Specialist.” By July, we were with the new doc who said “I think you were misdiagnosed originally with Relapsing Remitting MS and you’ve always had Primary Progressive MS.” BAM. Wait…the RIGHT diagnosis was still the WRONG diagnosis? And, he has the really BAD kind of MS? Oh, fuck. Well, what does this mean? We had already experienced life with MS and did this mean that more major changes were coming sooner? But our kids are only 2 and 4 and we can’t handle anything more!!! No…one of the “nice” things about MS is that your historical symptoms are a indicator for future symptoms. If Gary did have Primary Progressive MS, because his progression was actually so slow for the past 10 years, he’d continue to progress slowly. Then the doc shared, “by the way, the medication you’ve been on for 8 years hasn’t been doing anything for you…but there also wasn’t a medication to treat the type of MS you had…so you didn’t really miss out.” So there we were, still living in the world of misdiagnosis but nothing to be made about, I guess. Aside from 8 years and a few thousand needle pricks. Gary starts a new medication on January 23rd – an infusion created to treat progressive MS. It’s the only medication available to treat his type of MS. We’re excited and anxious and eager and scared. Mostly excited about having 5 free hours of sitting still outside of our home so we can get some good reading in 🙂 I kid. I’m constantly asking Gary how I can help and he usually says “cure MS.” I appreciate his confidence in me…but, I try to answer his request by participating in MS fundraising events. This year, we’re doing Walk MS for our 2nd year in a row and I hope this post may inspire you to join us. I like to think that the $125k that Gary’s Gang has raised in 9 years has something to do with the new medication developed and the continuing research to improve life for all of us. Join us here: http://main.nationalmssociety.org/goto/garysmsgang Thanks for reading. Much love!