Our MS Journey Officially Begins

We saw the neurologist today. He reaffirmed that Hubby has Multiple Sclerosis. He thought before that he had the Relapsing Remitting MS. We did not. For nearly three years, Hubby has only had progression. Doc now says he likely has Primary Progressive MS.

We went over the lumbar puncture results as well as treatment options. He recommends a medication administered by infusion. It involves a long drive and the first two infusions would be two weeks apart. An infusion visit is about 2 1/2 hours long, sometimes 3 hours. One of his current medications was tripled in strength. That should help his pain and perhaps help him walk or regain his fine touch for simple things like holding a cup or even play guitar. He wants to help me around here.

We have an issue where the infusions can only begin 4-6 weeks after the second COVID vaccine. We are now eligible for that in this area. It’s a matter of finding out when and where we can get it.

We are now considering a wheelchair ramp. If the infusions reverse progression, we may not need it. Perhaps we can borrow one from the town. They offer one for three months for temporary disabilities. This is not a temporary disability but three months would help until treatments can begin.

There are so many things to consider. It’s a bit overwhelming. He still says it’s not fair to me. Life’s not fair. We’re in this together. He mentioned where he’d like to be buried. He laughed. I told him it wasn’t funny. He figured he’d rather be buried next to the church near his 7 times great-grandfather who founded this town in 1640. He’d of course be in the newer section. He is currently the last direct descendant still in this town. Oy! Gallows humor is becoming a regular thing with us. That may be a good thing.

For now we’re back to taking one day at a time and coveting prayer. Wasn’t retirement supposed to be easier? Oh well. Here we go!

2 thoughts on “Our MS Journey Officially Begins

  1. One day at a time is right! I frequently write about multiple sclerosis on my blog as well, and have even written a book after recovering from a very difficult start to 2020. Please try to stay positive! I know that is always easier said than done. Best of luck moving forward.
    (PS I am also receiving Ocrevus infusions, which is on my blog, too! Maybe it can help with questions!)

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