It’s been a while since I shared an update on my MS journey, and a lot has shifted over the last few months.
For a while now, I’ve been dealing with leg spasticity. It started out as a minor annoyance, but it slowly and steadily worsened to the point where it was heavily impacting my daily life. Walking long distances or for a long period of time has become a burden and running for any length of time is difficult. My legs lock up and I start tripping over myself. I finally hit my threshold and decided it was time to stop just managing it and actually do something proactive about it.
Here is where things stand now, from the logistical hurdles to a major win with my treatment plan.
The Care Team and Logistical Gymnastics
Taking action meant expanding my medical circle. I saw a specialist, and I now have a dedicated case manager based out of Salt Lake City to help coordinate everything.
Of course, a new specialist means new data. I had to jump through some major administrative hoops to get them what they needed, including:
- Fresh Testing: Undergoing a new round of MRIs in California alongside extensive blood work to build a clear, updated baseline.
- The Records Battle: Trying to retrieve my old medical records from Kaiser proved to be nearly impossible. If you’ve ever tried to migrate complex historical health data between systems, you know exactly how frustrating that brick wall can be.
Despite the paperwork headache, we got enough data over to the specialist to pivot my treatment strategy.
A Game-Changer: Starting Kesimpta
Because we are focused on aggressively halting the progression of the disease, my specialist handed me three sample doses of Kesimpta (ofatumumab).
When I looked into the logistics of this medication, my jaw dropped: each monthly dose costs nearly $10,000 out of pocket, sometimes more.
Retail Cost: ~$10,000 / month
My Out-of-Pocket: $0 (Thanks to insurance & co-pay assistance)
Kesimpta is a monoclonal antibody. It’s essentially a targeted “lifestyle drug” for people living with MS, introduced about 5 to 6 years ago, and it has an incredible track record for preventing the progression of the disease.
The absolute best part? I don’t have to spend hours sitting in an infusion center. It’s designed completely for convenience and independence:
- Doorstep Delivery: It arrives directly at my door, completely refrigerated, every single month.
- At-Home Administration: It’s a simple, quick autoinjector prick into the upper thigh that I can handle myself in seconds.
A Note of Gratitude: Navigating health insurance is usually a nightmare, but between my primary insurance and my employer’s co-pay assistance program, the entire cost is completely covered. I am incredibly grateful to have access to this tier of care without the financial burden.
I’m feeling optimistic about this treatment plan and proud of myself for actually doing something about it.