Advocating for Your Health Means Watching Out for Symptoms and Speaking Up
- Actress Selma Blair, 51, best known for her roles in “Cruel Intentions” and “Legally Blonde,” shared that her struggles with multiple sclerosis began during her youth. One doctor dismissed her painful symptoms and suggested she get a boyfriend to help her cope.
- Blair was diagnosed with the disease in 2018 after seeing an eye doctor for eye pain. She entered remission three years later after a long, tough battle with multiple sclerosis.
- Multiple sclerosis is a disease of the brain and central nervous system that causes numbness or weakness in the limbs, fatigue, lack of coordination, blurry vision, and unsteady gait.
- Blair turned to autologous hematopoietic stem cell transplantation (AHSCT) (also called bone marrow transplantation) to help treat her MS. This form of therapy helps “reset the immune system.”
- Research published in Frontiers in Neurology in 2022 cited several studies and clinical trials showing promise in helping MS patients manage their condition. One study found that “83% of patients” who underwent a bone marrow transplant were left with “no evidence of disease” within just two years.
- Patients who believe their symptoms have been dismissed by a doctor should seek another professional opinion. This is a means of advocating for yourself and the care you receive. A different doctor may see you as an individual and not fall back on assumptions.
Actress Selma Blair, 51, lived with debilitating pains associated with multiple sclerosis for several years before getting a handle on her symptoms. The condition causes numbness or weakness in the limbs, fatigue, lack of coordination, blurry vision, and unsteady gait. The “Cruel Intentions” star revealed part of her struggle was finding relief and comfort from her doctor, who dismissed her symptoms and suggested she get a boyfriend to help her cope.
“I just cried,” Blair said during a “Today Show” interview.Read More
Blair had experienced symptoms related to multiple sclerosis since her youth, but it was officially diagnosed in 2018. She believes the assertion her doctor suggested she get a boyfriend to help her cope with her emotions while managing her symptoms was an example of gender bias in medicine.
“I think primarily when I was young…they were all older male doctors who probably did not know the intricacies of a girl and that everything does not need to be blamed on menstruation.,” she said.
Helping Multiple Sclerosis Patients with Resources
- ‘Don’t Stop Me Now’ Is Inspiration for Anybody With Multiple Sclerosis
- Multiple Sclerosis and Diet: Can the Paleo Diet Manage MS?
- Living With Multiple Sclerosis, Christina Applegate, 51, Missed Event to Focus on Getting ‘Stronger’ Former Co-Star David Faustino Shows ‘Love & Support’
- Jack Osbourne, 37, Son of Rocker Ozzy, Shares What It's Like Living With Multiple Sclerosis & Learning to Manage Symptoms of the Incurable Disease
Become Your Own Biggest Advocate
Blair’s traumatic story of having her symptoms dismissed by doctors is heartbreaking. However, these experiences are not uncommon. SurvivorNet has shared similar stories from countless cancer patients who possibly missed out on earlier treatment because a physician dismissed their symptoms for something else. Knowing you must be your own advocate when fighting for your health is important. By advocating for yourself, you can ensure that your doctor sees you as an individual and doesn’t fall back on assumptions.
One way to advocate for your health is to seek multiple opinions about your care. If one doctor does not offer you answers or a remedy to relief, seek out another.
“If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care,” National Cancer Institute Chief of Surgery Steven Rosenberg told SurvivorNet in an earlier interview, “because finding a doctor who is up to the latest of information is important.”
WATCH: The value of getting multiple opinions.
Other reasons to get a second opinion include:
- To see a doctor who has more experience treating your type of cancer.
- You have a rare type of cancer.
- There are several ways to treat your cancer.
- You feel your doctor isn’t listening to or giving you good advice.
- You have trouble understanding your doctor.
- You don’t like the treatment your doctor recommends or are worried about its possible side effects.
- Your insurance company wants you to get another medical opinion.
- Your cancer isn’t improving on your current treatment.
Understanding Blair’s Disease
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 to the body’s arms, legs, and other parts to function normally.
Symptoms often associated with multiple sclerosis may include numbness, tingling, or sudden limb weakness that affects just one side of the body. Common symptoms include vision problems, lack of coordination, unsteady gait, and fatigue.
There is no cure for MS, but MS warriors battling the disease do have methods to manage their symptoms.
Common tools MS 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 “has been shown to slow disease progression and disability; options include injectable agents, infusions, and oral medications targeting different sites in the inflammatory pathway.”
DMTs help stave off attacks of the disease and prevent relapses, which are triggered when the central nervous system becomes inflamed.
The drug mitoxantrone, which has been used as a DMT, is currently the only chemotherapeutic agent approved for the treatment of MS in the United States. An injection is usually given once every three months for about two to three years. The drug only helps control the disease and does not cure it.
While chemotherapy is widely known as a cancer treatment, it is also effective at slowing down or stopping disease activity in MS.
Blair underwent chemotherapy as part of her treatment for MS. She shared a photo on her Instagram post-chemotherapy of her hair regrowth after losing it during treatment, a common side effect of chemotherapy.
“Generally, in terms of hair loss, it would begin about three weeks, three to four weeks, after your first chemotherapy treatment. Generally, people will start to see some regrowth about four to six weeks after their last treatment. As long as you aren’t being treated with another medication that might cause hair loss,” Rusziewicz added.
Blair said it took her a while to recover from the bone marrow transplant in 2021, but she now feels “stronger.” The procedure helped her enter remission.
Since her MS diagnosis, she’s become a visible advocate for other people living with MS.
“It’s been a really lovely journey in this second part of my life of finding [my] community and realizing that nothing feels as good as helping to be a megaphone for other people,” Blair said.
Questions for Your Doctor
If you are facing a multiple sclerosis diagnosis, you may be interested in learning more about treatment options to help you best manage your symptoms. Below are some questions to help kickstart a conversation with your doctor for solutions.
- What forms of treatment do you believe would be most effective based on my MS symptoms?
- Are there any side effects I should expect if I started the recommended treatment?
- How likely am I to be eligible for HSCT chemotherapy to help treat my MS?