Leading a Full Life in the Face of Multiple Sclerosis: Alyssa’s Story
Alyssa LaFlamme, 45, is a wife and mother of two children who has been living with multiple sclerosis (MS) for at least 23 years. For the first eight of those years, she didn’t even know it.
At age 22, Alyssa began having numbness and tingling on her right side. An MRI scan showed a large lesion (damage) on the left side of her brain. Doctors said she had a brain tumor and may only have a few years to live.
Alyssa was immediately started on chemotherapy and radiation therapy. About two weeks later, her radiation oncologist noticed she wasn’t experiencing any symptoms beyond feeling tired. That was strange for someone who supposedly had a brain tumor.
A subsequent brain biopsy yielded a new diagnosis: acute disseminated encephalomyelitis (ADEM). This rare neurologic condition causes symptoms like headaches, fever, weakness, and numbness. However, it is rarely fatal.
Since ADEM can be challenging to manage and is related to MS, Alyssa’s local neurologist in Western Massachusetts referred her to the Mass General Brigham Neuroscience Institute. That is where Alyssa met Mass General Brigham neurologist Tanuja Chitnis, MD, FAAN, who specializes in caring for patients with MS.
Since there was no treatment for ADEM, Dr. Chitnis explained, Alyssa’s care would become a watchful waiting process: Each year, scans of her brain and spinal cord would help her doctors look for any signs that the disease was changing. If a new lesion appeared, it would tell them that Alyssa’s condition was not ADEM after all, but rather MS.
“I was relieved that I wasn’t going to die within a few years,” Alyssa said. “But I also had a lot of uncertainty about what my life would look like. How often would the numbness and tingling pop up? Would my condition stay the way it was or get worse? There was no way of knowing what was going to happen next.”
New symptoms lead to new diagnosis
Over the next few years, life moved forward. Alyssa got married, welcomed a son, and generally felt good. Then, around age 30, she began experiencing a painful heaviness in her right leg.
When an MRI found a new lesion on her brain stem, her diagnosis changed from ADEM to MS. MS, a long-term neurologic disease, happens when the immune system mistakenly attacks myelin, a substance that surrounds your nerves and sends signals between your brain and body. Damage to myelin slows down these signals or blocks them completely. Symptoms like vision loss, difficulty with balance, and muscle weakness can follow.
Fortunately, Alyssa was with the right doctor. Dr. Chitnis has cared for patients with MS since 1998, founded New England’s first pediatric MS clinic in 2004, and co-directs the adult MS Center at Brigham and Women’s Hospital. Over her long career, she has witnessed—and, in some cases, helped advance—major improvements in MS treatments.
“When I entered the field, we had one therapy for MS, and it worked only moderately well,” she said. “Today, we have over 20 therapies. We can now offer patients much more effective treatments that keep their disease under control, stop relapses, and slow down disability.”
As a result, the outlook for people with MS is much brighter today.
“The first thing I say to my new patients, especially the younger ones, is that despite your diagnosis of MS, you can do anything you want in life,” Dr. Chitnis said. “You can go to college, have a career that you choose, and have a family if you wish. We’ll monitor you very closely and work with you to make sure you’re on the right treatment at the right time.”
Learn about multiple sclerosis treatment
Specialized care for a high-risk pregnancy
Dr. Chitnis started Alyssa on a medication that required weekly self-injections. A couple years later, Alyssa became pregnant again. Given her MS, it was considered a high-risk pregnancy.
Two decades ago, Dr. Chitnis explained, women with MS were counseled not to get pregnant. Doctors have since learned how to help patients navigate pregnancy more safely.
“You have to know which MS medications are safe during pregnancy and which ones must be stopped. And if you stop one, you have to know how to transition to a different medication,” Dr. Chitnis said. “All of that is best managed within a healthcare system like Mass General Brigham, where patients have access to multiple academic medical centers and specialists across many disciplines.
“Mass General Brigham is also home to deep expertise in women’s health and in caring for pregnant patients with MS.”
With careful monitoring, Alyssa’s pregnancy went smoothly, and she gave birth to a healthy baby girl.
‘I completely trust her’
By her late 30s, Alyssa was having breakthrough relapses, with new MS symptoms appearing or old ones getting worse. Dr. Chitnis adjusted her treatment plan. When one medication did not work, Alyssa started a stronger therapy given by infusion twice a year. She has been on it ever since.
“There can be some trial and error to find a medication that is both safe and effective for the individual,” Dr. Chitnis said. “Then there are challenges in managing treatment over a lifetime. The body evolves as it ages. It’s a constant challenge to figure out the right balance with medications.”
Alyssa’s confidence in Dr. Chitnis has never wavered.
She’s been my doctor for over 20 years, and we’ve been through a lot together. If she ever says, “This is what we should do,” I completely trust her.
Alyssa LaFlamme
- Patient treated for multiple sclerosis
Dr. Chitnis is also active on the research front. One of her many research priorities is the CLIMB study. She is principal investigator of this long-term study, which is following 2,000 patients with MS at Brigham and Women’s.
Patients enrolled in CLIMB have an annual MRI, clinical evaluations, and blood studies. Dr. Chitnis examines study data to answer critical questions about MS and to advance MS diagnosis and treatment. This work helped lead to a biomarker (a measurable sign in the body) that can help identify MS relapses and is now used in more than 50 clinics nationwide.
“We aim to offer clinical trials that give our patients early access to the newest and most promising drugs,” she said.
Leading a healthy lifestyle pays off
Alyssa typically makes two annual visits to Dr. Chitnis’ clinic. She also has one or two MRIs a year to monitor her MS. An infusion center opened near her home in Granby, Massachusetts, a couple years ago, so she can avoid driving to Boston for some treatments.
Like many people with MS, Alyssa deals with occasional flareups of symptoms and ongoing fatigue. But thanks to the care she has received at Mass General Brigham—and her commitment to leading a healthy lifestyle—her quality of life is quite good.
“I’m a mom of two kids, and I have a busy job,” she said. “A key thing for me is keeping my stress under control and getting enough sleep. I also do weight training at the gym, boxing with a heavy bag, and walking outside or on my treadmill.”
Alyssa struggled to put into words her gratitude for Dr. Chitnis. “I can’t imagine being on this journey without her,” Alyssa said. “She has a way of making me feel like it’s going to be okay. She’s pretty amazing.”