The Daily Challenge of Living with Multiple Sclerosis

Even though she was experiencing symptoms as early as 1998, Jessica Petroff chalked up these issues to having just given birth to a child, never imagining she was suffering from multiple sclerosis (MS).

Petroff started experiencing a numbness and tingling on one side of her body, followed by fatigue and double blurry vision. Later on, she would develop speech issues as well.

“I kind of pushed it off because I was a new mom, I had a 5-month old baby,” Petroff said. “I kind of thought it was just stress. My husband traveled about 6 months out of the year and we lived out of state away from family and friends.”

Petroff ended up seeing a physician who concluded she had carpal tunnel syndrome. After she became pregnant with her second child, all of Petroff’s symptoms seemed to disappear.

Unfortunately, this was short lived and the symptoms returned after her second child was born in 2000.

“I nursed her for a full year or so and the symptoms kept getting worse and worse,” Petroff said. “I got optic neuritis and I went blind in one eye. I couldn’t keep my balance and I was falling down all the time.”

It wasn’t until 2002 when she checked into the emergency room in Tennessee that Petroff received the news that she had MS.

The news of her diagnosis came as a relief to Petroff. She knew what MS was because her good friend from church had it as well. Finally, she had the answers to what was going on with her body. Although Petroff was diagnosed 13 years ago, she’s been living with this disease for nearly 18 years.

During her journey, Petroff has been on 5 disease modifying therapies and officially failed all 5. One of those therapies she participated in was a phase 3 clinical trial in 2008 testing the investigational drug FTY720 fingolimod, now known as Gilenya.

Petroff received the real drug instead of the placebo and stayed on it for some time. However, in September 2014 she stopped taking Gilenya because it was no longer working.

Petroff experienced mild side effects while taking Gilenya, such as nausea, drop in heart rate, and diarrhea. Fortunately, these side effects only lasted for the first 3 weeks before going away completely.

Next, Petroff participated in a phase 1 clinical trial in 2013, which is currently ongoing. Petroff was given the drug rHIgM22, a remyelinating antibody, through an IV infusion where she remained in the hospital for 3 days. She was able to continue using Gilenya while participating in this trial.

Petroff was given the real drug over the placebo and although she didn’t experience any side effects, she didn’t see any benefits either.

“It’s supposed to help repair my myelin,” Petroff said. “It’s in phase 2 right now and I think they’ve discovered that it doesn’t do that in humans. So I don’t know what they are doing now. Last time I talked to my doctor about it, I think he had pulled out of the study.”

Petroff has also participated in 2 exercise clinical trials sponsored by the University of Illinois at Urbana-Champaign. The study looked to collect data on how active the participants were throughout a period of several weeks. Petroff was given a device to wear that recorded her activity, and she also kept a journal to record these activities.

“I’m on hold for treatments right now. I am waiting on OCRE (ocrelizumab) to be approved,” Petroff said. “It’s supposed to be FDA fast tracked for progressive forms of MS that includes primary progress. It’s going to be the first treatment that’s approved for primary progressive and used for relapsing remitting MS as well. I will start that treatment when it is approved. In the meantime, I am on a drug holiday.”

Finding treatments that work can take a toll on an individual and their family, and Petroff was no different.

“The biggest challenges I feel that I’ve faced personally is finding a treatment that works and continues to work,” Petroff admitted. “Gilenya did really well for about 4 and a half years, and I started relapsing again. Unfortunately if it’s not working, it’s not working. We are very hopeful of this new drug and I’m hoping it gets approved.”

Many MS drugs are T-cell derivative, while ocrelizumab is derivative of B-cells.

“With my MS, my B-cells are more attacking,” Petroff said. “We’re thinking that maybe that’s why the other drugs haven’t worked for me.”

Another challenge many patients deal with is the high cost of treatment for chronic conditions.

“It’s very expensive to have a chronic illness with no cure, its financial impact is huge,” Petroff said. “Thank goodness there are assistive programs through the pharmaceutical companies and I’m very appreciative of that, but not always. Not every pharmaceutical company does offer assistive programs. They’re starting to come around and doing better, but not all of them do.”

Other challenges patients face is potential loss of work and income after relapse, which can have a huge impact on families. There can also be a struggle with attending different activities and trying to live a life of quality.

“(At times you might) not be able to attend family functions or extracurricular activities that your children are in,” Petroff said. “(This) may be due to not having accessibility or just overall fatigue and not feeling well enough to be able to get out of the home.”

Although Petroff is not currently in a wheelchair, there have been times that she has been forced to use one.

“There’s been bouts of time when relapses have left me wheelchair-bound and I fought very hard,” Petroff said. “As a matter of fact, I just went through extensive rehabilitation this past year that took me off of assistive devices. It was a struggle, but you know, I fight — I fight, fight, fight.”

Since her MS has caused her to slow down quite a bit, Petroff is no longer able to work full-time as a certified medical assistant in family practice. Fortunately, she is still able to work 3 or 4 times a month and on an as needed basis.

“I love to work, I miss working, I miss patient care,” Petroff said. “So it’s important for me to at least try to do that, and in order to get back to helping with patient care I had to be able to walk unassisted. So I got that.”

In order to stay positive, Petroff likes to keep up-to-date on all the research that has been done.

“Seeing that and knowing that there’s more stuff coming and that scientists are really out there trying to find the cause and more drugs to help slow down the progression, helps keep me positive,” she said. “Because without that, there’s not hope and without hope, there’s not much else. So that helps keep me positive. I’m a research buff, I love it.”

Petroff also stays very busy in the MS community. She is the Indiana Ambassador for the Multiple Sclerosis Foundation (MSF) and a district activist leader for the National Multiple Sclerosis Society in Indiana, as well as participating in patient and research advocacy.

“I think education is a very key component, because when you’re first going through having all these new symptoms and you’re newly diagnosed — especially now with the internet – there is just so much out there that is not true,” Petroff said. “I feel it’s very important to make sure that the newly diagnosed, and some that have had it for a while who still don’t really understand their disease, knows about it, have the right resources, and know where to go to get information and help.”

Petroff also educates those outside of the MS community who do not suffer from MS. So far she has spoken to college students, medical students, and nursing students to provide them with more education about this disease and is planning to give more education for first-responders and police.

Furthermore, Petroff is in the process of updating the database for Indiana and MS neurologists to ensure they have all the correct information, including doctor’s names, addresses, and phone numbers.

Petroff became district activist leader for the National Multiple Sclerosis Society last year. This entails meeting with representatives from her district to try and get more funds for research.

Since veterans who are diagnosed with MS have difficulties getting the quick treatment they need, Multiple Sclerosis discusses getting bills passed for them.

“Living with a chronic disease that has no cure, I have found that education about MS is extremely important to me,” Petroff said. “I have researched and learned so much about MS that I am able to help educate others.”

However, her main priority at this time is updating the census for neurological disorders, which has not been taken in the United States since 1973.

“If they have a correct number of people that are not only diagnosed with MS, but other neurological disorders, then that tells them, ‘oh, maybe we should start maybe researching why so many people are being diagnosed,’” Petroff noted. “Hopefully we can find a little more cause and get more money for research. I think that’s really key.”

In order to make her journey a little bit easier, Petroff has undergone some lifestyle changes including exercise and a healthier diet.

“I tried to make sure that I stayed as active as possible and I really made sure that I kind of cut processed foods out of my diet,” Petroff said. “I cheat occasionally, but for the most part everything’s pretty much fresh and organic, I make sure of that. I don’t really consume much dairy because that increases inflammation. I do a little bit but not a terrible amount. I haven’t cut it completely out of my diet.”

These changes have resulted in her losing weight and helping with fatigue.

“I just overall felt as best as I could considering I had MS,” Petroff said.

For those who have recently come into a caregiver role for a loved one or friend with MS, Petroff stresses the importance of educating yourself in order to lend better support and assistance.

“Learning as much as you can about the disease and not being afraid to ask questions in order to help best understand their partner with MS (is key), because it’s hard for someone going through MS to explain it to them,” Petroff said. “It’s more frustrating to have to constantly explain things, so the best advice I would give is just learn as much as you can about the disease. That way you can support it fully, understand what’s going on, why it’s going on, just be there and not try to fix it because you can’t fix it.”