Coping With Multiple Sclerosis (MS)
- Actress Selma Blair said in a recent interview with British Vogue that doctors misdiagnosed her multiple sclerosis for 40 years as other conditions before she finally received the care she needed.
- She said that when she began experiencing symptoms as a child, as she struggled to use her right eye and left leg, in addition to having difficulties controlling her bladder.
- Multiple sclerosis is an auto-immune disease that causes nerve damage.
- There are 400,000 people suffering from MS in the United States, according to scientific research.
- In “Don’t Stop Me Now,” SurvivorNetTV features the story of one incredible MS warrior, who like Blair, learns to overcome her own hardships, and inspires countless people along the way.
Having been featured on the cover of the May 2023 issue of British Vogue, the 50-year-old actress has been commended for her strength and ability to exude confidence while living with MSRead More
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Speaking to British Vogue, the Michigan-born Blair recounted how one of her earliest concerns was being unable to use her right eye and left leg, in addition to having difficulties controlling her bladder.
Sometimes she would even wake up during the night laughing uncontrollably. However, Blair insists her family and doctors at the time dismissed her symptoms as attention-seeking behavior after confirming she didn’t have cancer.
Now knowing her childhood struggles were undiagnosed juvenile MS, she tells British Vogue, “If you’re a boy with those symptoms, you get an MRI. If you’re a girl, you’re called ‘crazy.'”
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As she grew older, Blair begin experiencing bouts of unprovoked and uncontrollable crying, something she likened to being “a hugely emotional person.”
The reasoning, as she now knows, was due to her undiagnosed MS having damaged her brain’s frontal lobe, which according to Cleveland Clinic, “is home to areas that manage thinking, emotions, personality, judgment, self-control, muscle control and movements, memory storage and more.”
Blair’s MS has since gone into remission after she received a hematopoietic stem cell transplantation in 2019. However, her condition often changes.
“Sometimes I can’t eat for days, and then when I can relax I overdo it and all the hunger rushes in,” Blair, who lives in Los Angeles, told the magazine. “I require more sleep than a bear in winter.”
She also admitted to turning to alcohol to cope with her struggles, as well as self-medicating through the pain, and trying to hide her symptoms while being filmed.
“I was worried since the beginning of time that a glaring fault would remove me from the workforce. And usually it was my incoordination or getting stuck, too weak or sick, in my trailer – or any time, really. The vomiting or body issues were terrifying, [and the] baldness or rashes,” she added.
However, since learning of her diagnosis and becoming a “disability advocate,” Blair enjoys raising awareness for the condition and acting as a role model for those dealing with MS.
Blair, who showed off her cane during her recent Vogue photoshoot, also spoke about how she now depends on her mobility aid.
“I have an emotional and physical attachment to the cane. I settle in my voice and body as soon as I hold [it]. It’s an extension of me,” she said.
“And I know it adds to visibility. So many younger people have started publicly embracing their sticks more. I do think representation matters. If I can help remove stigma or over-curiosity in a crowd for someone else, then that’s great.”
Meanwhile, Blair remains grateful for having her 11-year-old son Arthur Saint Bleck by her side, in addition to her sweet service dog Scout and close friends like Christina Applegate, who has been battling MS since 2021.
Applegate, 51, told British Vogue, “Selma has had an incredible impact on the MS community but, more so, she’s had an impact on how the world views it.”
Recalling when Blair urged her to get checked for MS, Applegate said, “I was sitting in Selma’s living room, our children playing, and I told Selma I’d been having this weird tingling in my feet. She said, ‘You must get tested for MS.’ [Even my doctor doubted it] but there it was. In essence, because of her I’m going to have a better quality of life.”
Understanding Multiple Sclerosis
Multiple sclerosis (MS) is a potentially disabling disease of the brain and spinal cord (central nervous system), according to the Mayo Clinic.
It causes the immune system to attack the protective sheath (myelin) that covers nerve fibers, ultimately leading to communication problems with your brain and the rest of your body. The disease can eventually result in permanent damage or deterioration of the nerves.
Advocating For Yourself While Navigating the Medical World
Signs and symptoms of MS can vary greatly but may include:
- Numbness or weakness in one or more limbs that typically occurs on one side of your body at a time, or your legs and trunk
- Electric-shock sensations that occur with certain neck movements, especially bending the neck forward (Lhermitte sign)
- Tremor, lack of coordination or unsteady gait
- Partial or complete loss of vision, usually in one eye at a time, often with pain during eye movement
- Prolonged double vision
- Blurry vision
- Slurred speech
- Tingling or pain in parts of your body
- Problems with sexual, bowel and bladder function
Most people with MS experience periods of new symptoms or relapses followed by quiet periods of disease remission. These relapses can develop over days or weeks and the remission periods can last for months or even years.
Leading Experts Urge Us to Be Proactive
“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.”
Cancer Research Legend Urges Patients to Get Multiple Opinions
As we highlight in several areas of SurvivorNet, highly respected doctors sometimes disagree on the right course of treatment, and advances in genetics and immunotherapy are creating new options.
Also, in some instances, the specific course of treatment is not clear-cut. That’s even more reason why understanding the potential approaches to your disease is crucial.
At the National Cancer Institute, there is a patient referral service that will “guide patients to the right group depending on their disease state so that they can gain access to these new experimental treatments,” Rosenberg says.
Furthermore, seeking additional opinions may also help you avoid doctor biases. For instance, some surgeons own radiation treatment centers.
“So there may be a conflict of interest if you present to a surgeon that is recommending radiation because there is some ownership of that type of facility,” Dr. Jim Hu, director of robotic surgery at Weill Cornell Medical Center, previously told SurvivorNet.
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 like your doctor isn’t listening to you, or isn’t giving you good advice
- You have trouble understanding your doctor
- You don’t like the treatment your doctor is recommending, or you’re 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
What it comes down to is that being proactive about your health could be a matter of life or death. Obtain as much information as you can from as many experts as you can connect with, so that you know that you did your best to take control of your health.
Hope for Multiple Sclerosis Patients
There are 400,000 people suffering from Multiple Sclerosis (MS) in the United States. In “Don’t Stop Me Now,” SurvivorNetTV features the story of one incredible MS warrior, like Blair, who learns to overcome her own hardships and inspires countless people on their journey.
MS warrior Louise Carr might look perfectly healthy on the outside, but hiding behind her warm smile a war rages on inside her body.
The disease causes her daily pain, fatigue, memory loss and restricts movement. However, even in her darkest moments, Carr holds true that “I might have MS, but it doesn’t have me.”
‘Don’t Stop Me Now’ Is Inspiration for Anybody With Multiple Sclerosis
For Carre, switching over to a vegan diet—paired with a focus on living a more active life—has been life-changing. Through yoga and Zumba classes, in addition to riding a recumbent bicycle, she was able to find both an improved physical and mental outlook.
“To my absolute astonishment within a week of becoming vegan my energy levels absolutely shot up. It’s changed my life,” Carr explains.
SurvivorNetTV Presents Defying All Odds A World-Renowned Doctor’s Incredible Journey Through MS
Contributing: SurvivorNet Staff
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