Summer 2023 trip, D3 - 1st MS treatment

Treatment for the primary progressive variant of multiple sclerosis is a semi-annual infusion of a drug called Ocrevus. It doesn't cure anything; nor does it fix the nerve damage that has already happened. The only thing it does slow the progression of the disease. It's better than nothing.

I was first diagnosed in January 2018, and spent the rest of the year going through the Army's medical evaluation board process. In February 2019 I officially retired, but it wasn't until I got a job in Japan in January 2020 that I started seriously looking at treatment options.

The first administration of the drug is in half-doses separated by a two-week period, because guarantee that a patient's body will handle it well. That wouldn't be a problem if I could get treatment in Japan.

Unfortunately, I learned that Ocrevus is not licensed in Japan, so treatment in a civilian hospital wasn't an option. Nor did the military bases there have an infusion clinic that could handle my case, so that option was out. The only treatment option would have been to travel back to the United States.

But then COVID happened, and Japan instituted two-week quarantines for everyone traveling into the country. Given that 1.) I was a new employee, and 2.) I'd already traveled back in May for my brother's funeral in October for my sister's wedding, I wasn't in a good position to taking weeks off of work for the treatment, and then more weeks off of work sitting in quarantine. So I put it off.

Then, in summer 2022, I started my current job in Germany, and started looking at treatment options again. Fortunately, Ocrevus is available in Germany.

Plus, there's a military hospital in Landstuhl, which is only an hour away. However, it's devoted to active duty military personnel only -- it's not accepting new military retiree patients, and civilian employees are told to use German facilities.

In consultations with German doctors, though, I learned that they would not front the cost of the drug. I would be responsible for dishing out the ~$15,000 first, and then applying for reimbursement with my insurer afterward.

That's a lot of risk to take on, and I wasn't interested in taking out a home equity loan every six months, so when I visited Wisconsin last Christmas, I stopped by the veteran's hospital in Maidson. There, I made arrangements to begin my first treatment during this trip in the summer. That's what I did today.

The appointment began at 8:00 in the morning. They start you off with a couple of aspirin and some other thing (I don't know what it's called or what it's for), which make you drowsy and helps you with the discomfort of having a "cannula" (if I'm using that term correctly) inserted into your wrist.

Then, you sit back and relax as the bag of saline gets administered directly into your blood stream.

Something I didn't anticipate was how often I'd have to go to the bathroom, but yeah -- when you have fluid piped directly into you, your kidneys have to pick up the slack. So about every hour I'd have to disconnect the little trolly thing, and wheel it to the bathroom.

Apart from that, it's actually a very relaxing experience. You can watch TV, there's free wi-fi, and you get free snacks, too (nothing fancy -- stuff like pretzels and those little 6-ounce cans of Shasta). And since appointments tend to last until 1:00, they also provide a box lunch with stuff like a turkey sandwich and chips.

My next appointment for the second half-dose will be in two weeks, and we'll see how my body reacts to this one, but for now the only thing I can say is that I regret not having started treatment earlier.