Living with MS: Be Your Own Advocate

By Andrew Wilson

Denise Buccilli can describe the day in detail. She remembers walking into downtown Pittsburgh with a few co-workers from Duquesne University and how she grew more tired with every step.

“I told them that I had to sit down to rest, but I said to go ahead and I would catch up,” she recalls from that day in 2008. 

Wishful thinking, but something more than simply being tired was beginning to plaque her. “At first, I couldn’t feel my legs, but the lack of sensation started creeping up to my rib cage,” she said. Her doctor at that time diagnosed her with transverse myelitis. Eventually, the symptoms she exhibited lessened to the point where she was able to live normally for a while.

“I started having difficulties again right before the COVID shutdown,” she said. “That’s when a neurologist diagnosed me with multiple sclerosis (MS). Did I have MS all along and I was misdiagnosed? Or was I one of those rare people whose transverse myelitis develops into MS?”

Unfortunately, it’s not uncommon for MS to be misdiagnosed. Many health issues from migraines to fibromyalgia and myelitis can mimic or appear to mimic the symptoms of MS. A 2019 paper authored by María I. Gaitán and Jorge Correale titled “Multiple Sclerosis Misdiagnosis: A Persistent Problem to be Solved,” sought to quantify the extent of the misdiagnosis problem. One study they cited examined patients at four MS centers located in university hospitals and reported that as many as 50 percent of patients carried a misdiagnosis for at least three years before finally being diagnosed with MS.

While researchers are working diligently to find a cure for MS, there is still no cure. However, there are medications and therapies that can slow the progression, alleviate the symptoms, and improve the overall quality of life for someone with MS. Of course, the best course of treatment begins with a timely diagnosis, which is something that didn’t happen for Denise.

“I am in a wheelchair 97 percent of the time,” she said, explaining that in 2020 her MS flared to the point where she couldn’t stand up without assistance. “I walk when I go to physical therapy, but I don’t have room at my house to walk like I do in the PT gym.”

As her mobility worsened, she and her husband Steve began to notice all the ways that society ignores the plight of the wheelchair bound. For instance, many doctor’s offices and – especially frustrating for women – gynecologist’s offices do not have exam tables that are accessible for people in wheelchairs. Additionally, the curb cuts at the corners of the intersections are great but do little for someone whose car is parked in the middle of the block. Like many things about MS, a patient doesn’t know which questions to ask until they are faced with a particular situation.

“I think I’m most frustrated by the fact that there is no single point of information for MS patients,” Denise said. “I never thought to look into certain resources until I was hospitalized in 2023.”

MS taxes patients physically, mentally, and financially. While there are some agencies and non-profits that provide resources – both tangible and financial – for MS patients, the resources available can depend on a number of factors. Plus, some agencies place limits on how often a patient can seek help, so you have to do your homework. 

“MS affects everyone differently,” Steve said. “A lot of the resources that we were able to access were because we discovered them on our own. We really had to do our own research. You have to be your own advocate.”

Some of the best information Denise and Steve received was from the physical therapists who worked with Denise. Some of it was found on the internet, which they acknowledge can carry risks of misinformation, so they caution everyone to be careful. 

“There is a lot of information on social media,” said Denise. “There are groups out there on Facebook and Reddit. Sometimes there is so much information that it can be too much to read every day.”

Whatever they learn on the internet, they take to Denise’s neurologist to help evaluate if it is a therapy for them to try. 

“It’s such a challenging disease,” Denise said. “I have become an expert on MS because I have the disease. It can be a full-time job trying to figure it out.”

MS Resources That May Be Helpful for Someone Newly Diagnosed

These are some of the resources that Steve and Denise have found valuable, but this list is not exhaustive. As Steve says, “Use what they can give you and move on to someone else. Be your own advocate.”

Social Media
*Please Note: Always exercise caution when searching medical advice on social media. There is a lot of misinformation available, so your doctor should be consulted before acting on any advice found on social media.

  • Facebook and Reddit – There are Multiple Sclerosis community support groups available.


YouTube Channels:

Additionally, Steve and Denise are residents of Penn Hills, and they have found that the Penn Hills Service Association can supply certain medical and convalescent equipment to community members in need. If you are a Penn Hills resident, the Association’s main phone number is (412) 798-9449. Although they only help residents of Penn Hills, there may be an organization with a similar mission that serves your area.