Defying Multiple Sclerosis to Achieve Goals
- Megan Boxall, 33, is running 200 marathons in 200 days despite living with multiple sclerosis, crediting her monthly injection treatment for helping her stay mobile and active.
- Multiple sclerosis is a disease of the brain and central nervous system that causes numbness or tingling in the limbs, fatigue, lack of coordination, blurry vision, and unsteady gait.
- Diagnosed just a year before starting the challenge, she says the experience has been difficult but “absolutely amazing,” even as MS commonly causes fatigue, coordination issues, and mobility challenges requiring ongoing MRIs and blood tests.
- Some MS patients use medical cannabis to help manage symptoms. Although some experts disagree with cannabis use, SurvivorNet understands it is legal in parts of the country, and there are some medicinal uses for it.
- If you are using cannabis, Dr. Brian Berman, professor of family community medicine at the University of Maryland School of Medicine, says users should tell their doctor about their smoking habits.
- “I think that you should always tell whichever therapy we’re talking about, you should always inform your oncologist and your physician, this is (using cannabis) what you’re doing,” Dr. Berman tells SurvivorNet.
- Although there is no cure for multiple sclerosis, many patients utilize common tools to improve their quality of life, including wheelchairs, canes, leg braces, and disease-modifying therapies (DMTs).
“Obviously, it has been hard, but it has been absolutely amazing and the most incredible and positive experience,” Boxall told BBC News.
Boxall credits her treatment for helping her stay on her feet.
“My multiple sclerosis treatment is pretty remarkable—I take an injection once a month that looks a bit like an EpiPen,” she wrote on her personal blog without identifying the treatment. “But it’s still something to stay on top of, which means blood tests and MRIs.”
Helping Patients Living With Multiple Sclerosis
(Why Some MS Patients Are Using Cannabis to Help Manage Symptoms)
“It’s been a lifeline for me,” William said in an Instagram post where he added that medical cannabis helps with pain management.
Williams’s incorporation of medical cannabis into his MS management routine is not unheard of, and some research studies say cannabis has provided other MS patients with medical benefits.
The National Multiple Sclerosis Society says, “Some [people living with multiple sclerosis] use non-inhaled cannabis products to manage symptoms. Although the FDA has not approved any cannabis-based medications to treat MS symptoms, you and your healthcare provider may consider medical cannabis for symptom management.”
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Research published in May 2022 in the peer-reviewed journal “Life” that studied The Efficacy of Cannabis on Multiple Sclerosis-Related Symptoms found that, “indications that cannabis will support the efficacy of cannabinoids, namely through an oromucosal spray (mouth spray) and orally, in the treatment of pain and spasticity, which are the most common symptoms in MS patients.”
Additional published research released in December 2022 in the peer-reviewed “International Journal of MS Care” found that within its own study involving 141 patients with multiple sclerosis, “Patients experienced extensive MS symptom improvement after initiation of MC, with alleviation of pain (72% of patients) and spasticity (48% of patients) and improvement in sleep (40% of patients) the most common.”
Why You Should Tell Your Doctor If You Use Cannabis
Although some experts disagree with cannabis use, SurvivorNet understands it is legal in parts of the country, and there are some medicinal uses for it. If you are using cannabis, Dr. Brian Berman, professor of family community medicine at the University of Maryland School of Medicine, says users should tell their doctor about their smoking habits.
“I think that you should always tell whichever therapy we’re talking about, you should always inform your oncologist and your physician, this is (using cannabis) what you’re doing,” Dr. Berman tells SurvivorNet.
Each state has its own requirements for obtaining a medical marijuana card. If you live in a state where medical marijuana use is legal and you think it might be the right treatment for you, start by talking to your doctor.
“Medical cannabis, if you think about it, is the only botanical medicine that can help nausea, increase appetite, decrease pain, and elevate mood,” Dr. Junella Chin, an integrative cannabis physician in New York, tells SurvivorNet.
Dr. Chin says she often sees patients seeking relief from the side effects of chemotherapy, which may include nausea, pain, decreased appetite, and depression. She says some physicians prescribe Marinol, or synthetic cannabis, to treat these side effects. However, she believes using the actual cannabis plant is much more helpful when used to relieve symptoms.
The cancer risks associated with smoking cigarettes are well-documented. However, some experts believe with conviction that cancer risks extend to smoking cannabis as well. Dr. Raja Flores, who is the Chairman of the Department of Thoracic Surgery for Mount Sinai Health System, is among those who believe cannabis fuels cancer risks.
“Smoking marijuana likely causes lung cancer independent of cigarette smoking status,” Dr. Flores told SurvivorNet.
“I do think for cigarettes, there is a genetic predisposition to get lung cancer. As well as a genetic predisposition for substance abuse. So, it would not surprise me that there is a genetic link to lung cancer from smoking weed,” Dr. Flores continued.
“As someone on the front lines, who sees this every day, I’ve seen lung cancer caused by marijuana that is incredibly aggressive,” Dr. Flores previously told SurvivorNet.
“There is no really good population-based study that looks at marijuana smoking, and that has had enough time elapsed to show it’s associated with lung cancer, [but] I’ve seen it. I’ve seen multiple cases of it. I see it every day,” he added.
Living with Incurable Multiple Sclerosis
Multiple sclerosis causes the immune system to attack cells that form the protective sheath that covers nerve fibers in the spinal cord. The disruption leads to communication problems between the brain and the rest of the body.
Once the protective barrier is damaged, the spinal cord struggles to communicate with the body’s arms, legs, and other parts to function normally.
WATCH: SurvivorNetTV Presents: Defying All Odds – A World-Renowned Doctor’s Incredible Journey Through MS
There is no cure for M.S., but M.S. warriors battling the disease do have methods to manage their symptoms.
Common tools M.S. patients use to improve their quality of life include wheelchairs, canes, leg braces, and some medical treatments called disease-modifying therapies (DMTs).
A study in American Family Physician found that DMTs “have been shown to slow disease progression and disability; options include injectable agents, infusions, and oral medications targeting different sites in the inflammatory pathway.”
Research published in Frontiers in Neurology last year says autologous hematopoietic stem cell transplantation (AHSCT) (also called bone marrow transplantation, with autologous meaning a patient’s own cells) used for multiple sclerosis therapy helps “reset the immune system.” Several studies and clinical trials using AHSCT have shown promise.
“In a meta-analysis of published studies using AHSCT for M.S. treatment, the pooled estimated transplant-related mortality was 2.1%, the two-year disease progression rate was 17.1%, the five-year progression rate of 23.3%, and a pooled 83% of patients had no evidence of disease activity at two years. Patients who had the most benefit and the least mortality rate were patients with relapsing-remitting M.S. (RRMS).”
Additional research published by NEJM Journal Watch says that AHSCT helps MS patients reduce relapses better than other forms of MS treatment.
The National Multiple Sclerosis Society outlines the different types of multiple sclerosis:
- Clinically isolated syndrome (CIS) is when an individual experiences a single neurological episode lasting 24 hours or less. CIS is what M.S. is diagnosed as until there is a second episode.
- Relapsing-remitting MS (RRMS): The most common M.S. among the million people battling the disease in the U.S., RRMS is marked by sudden flare-ups, new symptoms, or worsening of symptoms and cognitive function. The condition will then go into remission for some time before reemerging with no known warning signs.
- Primary progressive M.S. (PPMS): These individuals have no flare-ups or remission, just a steady decline with progressively worse symptoms and an increasing loss of cognitive and body functions.
- Secondary progressive M.S. (SPMS): This is an almost transitional form of M.S. that progresses from RRMS to PPMS.
Questions for Your Doctor
If you are diagnosed with MS or are concerned you have the chronic disease due to symptoms you’re experiencing, consider asking your doctor the following questions.
- Although there’s no cure for MS, which treatment option to manage my symptoms do you recommend for me?
- Are there any potential side effects of MS treatment?
- What if the treatment to manage symptoms doesn’t work?
- Will exercise or therapy help my symptoms?
- Are there any MS support groups you recommend to help me cope.
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