Living with MS: Perspectives on the Patient Journey

After diagnosis, challenges and a new normal

Let’s start with your experiences with MS and then discuss your advocacy efforts. Can you each describe how MS has affected your life? When did you first hear about it?

Michael: MS has affected my life in every way imaginable. I was diagnosed 18 years ago at age 20. At that time, I’d never heard of the disease. I’ve lived my entire adult life in pain, and I assume the rest of my life will be no different.

My symptoms can flare-up without warning. It started with numbness in random parts of my body, and it’s progressed to paralysis and frequent exhaustion. I went through a lot of testing before being diagnosed with MS, as doctors tried to rule out all other possibilities.

Later, many people in my life abandoned me, including my fiancé at the time and close family members. It’s hard for some people to accept or believe a young person needs to park in a spot that requires a disabled parking permit or use a cane to walk. Reactions can be cruel, and I’ve been assaulted because of this several times in my life.

Brigette: I was diagnosed with MS in 2015. Similar to Michael, I experienced numbness and tingling in different parts of my body until eventually I could not feel my left leg or arm. I remember going to a restaurant and having to lean on walls to walk.

When I went to the doctor, they said it was either a brain tumor, an infectious disease or MS. I had no idea what MS was. I can relate to Michael in that, after my diagnosis, a relationship and several friendships ended. Often times, I was too exhausted to go out with friends after work and on the weekends — this put strain on friendships.

Thank you for sharing those difficult stories. From your answers, there seems to be a need for additional MS awareness and patient advocacy. Neither of you had heard of the illness before it personally affected you. What has been your experience with treatments for MS? Is it tough to get on therapy?

Michael: Treatments for MS vary depending on type and progression of the illness. Patients with primary progressive MS (PPMS) have one FDA-approved therapy.^[5]Treating PPMS, National Multiple Sclerosis, 2020 Those with early-stage relapsing-remitting MS (RRMS) have quite a few FDA-approved therapy options, while those with later-stage secondary progressive MS (SPMS) have close to no specific therapy options, but several are in development.

In my experience, most of the available medications range in price from $3,000 to $9,000 per month. I’ve been emotionally and physically crippled by this disease for 16 years, but have not been able to afford MS therapies, even with insurance. One doctor even confused my inability to pay with a refusal to take the prescribed medication.

The process for getting on therapy is also difficult and confusing. For these reasons, I’ve only managed my symptoms and pain. I can’t help but wonder if some of the damage to my body could have been avoided if I had access to these medications.

Brigette: I completely agree with Michael that starting MS therapies can be difficult. After my diagnosis, I was prescribed an MS medication and it took four months to start therapy. In addition to lab work, my insurance required prior authorization (PA). I was initially denied therapy and asked to try a painful injectable, but my doctor appealed, and I was eventually prescribed an oral drug.

Since then, I’ve changed insurances a few times. Each time, the process starts all over again. Before taking the medication for the first time, or after accidentally missing a dose, I had to be monitored in case of an adverse event, which was tough to coordinate with my schedule. Also, my medication was only available through the mail and had to be signed for.

For someone with MS, in which physical exhaustion is a common symptom, it isn’t easy to start therapy. The process was frustrating, because I had no control or visibility into what was going on — and I couldn’t get straight answers on the status of my prescription. Fortunately, I’ve not had an MS flare-up for several years and have been able to suspend therapy. I want to see how my body will react without medication, or figure out if I even need medication, and to think about starting a family.

Starting a specialty therapy is not easy, and MS patients may need additional support during the process. What else do you want people to know about MS and MS patients? How can people get involved to help?

Michael: There is a saying among MS patients: “Once you’ve met one MS patient, you’ve met one MS patient.” In other words, the MS experience is different for each patient. The very nature of the disease makes it unpredictable and unique to each person. You might meet an MS patient who never needed to use a cane but talk with another who has to use a wheelchair.

People can get involved by donating to or volunteering with the National MS Society (NMSS). It doesn’t really take a lot of time, money or energy to help someone with MS. Helping can be as simple as holding the door open for them or just being a compassionate person who listens.

Brigette: I want people to know that no two MS patients are the same; however, we are all hoping and fighting for the same cure. To find a cure, we need to continue spreading awareness and funding research into MS. Events like Walk MS are perfect opportunities to show support and make donations.

Editor’s note: In the time since this article was originally published, Michael was able to access a new medication to treat his MS — and most of his mobility problems have been, at least temporarily, reversed. “I consider myself to be doing quite well with MS in comparison to where I was when this article was published in 2019,” he said.