When the brain can’t talk to the body: Multiple Sclerosis, Selma Blair, & Overlapping Symptoms
“Have you ever thought about Multiple Sclerosis?”
Yes, I have. This is something that I have spent hours on WebMD trying to decide if my symptoms fit this picture best.
What is Multiple Sclerosis?
Multiple Sclerosis is an autoimmune disease where your body attacks the central nervous system- think of the brain and the spine. Your immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication between the brain/spine and the rest of your body. Now, think of your brain as the conductor. It controls every movement you make. It controls how you respond to cold and heat. It controls your pain or numbness.
What are the symptoms?
Symptoms as defined by the NHI
fatigue
vision problems
numbness and tingling
muscle spasms, stiffness, and weakness
mobility problems (clumsiness, dizziness/vertigo, tremor)
pain
problems with thinking, learning, and planning
depression and anxiety
sexual problems
bladder problems
bowel problems
speech and swallowing difficulties
It can be difficult to cope with the effects of attacks on the body. Inflammatory patches can develop in the myelin sheath, which may show up on an MRI scan. Unfortunately, this can disrupt the messages traveling along the nerves, causing discomfort and frustration. The attacks cause the myelin sheath to become inflamed in small patches (plaques or lesions), which can be seen on an MRI scan. These patches of inflammation can disrupt the messages traveling along the nerves.
I won’t go into the conversation of what causes it or how it progresses. It is highly individualized. It can go into remission. It can progress into speech difficulties and problems with gait. It can leave you with numbness and tingling nonstop.
Selma Blair: My inspiration
I read Selma Blair’s memoir in April 2023, wanting to hear about her life. Selma Blair was diagnosed with MS in her 40s. She had gone to numerous doctor’s appointments to get answers, only to have her needs unmet. Selma wasn't aware that when she lost the use of her right eye, left leg, and bladder by the time she was 7, she was experiencing symptoms of the autoimmune disease. She had “mood swings,” labeling herself as a “hugely emotional person.” She was unaware that her lesions were in the frontal lobe of her brain.
“But they didn’t see the constant fatigue or the years of inflammation or the signs that presented themselves all along. I’d gone through a lifetime of knowing.”
When reading her memoir “Mean Baby,” Selma discussed how her doctor told her to keep circulation going in the spot where her brainstem met her neck. This was her problem area. And this opened my eyes as someone who has numbness and tingling in her hands and toes and neck muscle spasms. It is difficult to tease apart the symptoms sometimes when there are so many.
Also, while stalking her TikTok, Selma talked about having Ehlers-Danlos Syndrome. It is a condition that impacts crucial connective tissues throughout the body. Selma mentioned the pain that comes with it, and how much stretching has helped. I resonate with this as someone who has been suspected of having hypermobile Ehlers-Danlos Syndrome!
Losing Your Autonomy
“You realize this body you’ve inhabited for so many years—this bizarre collection of cells—has turned against you. It’s more than a betrayal. You feel trapped, a hostage inside your own skin. You are a stranger to you… The only dignity I have left is to be kind. Kind to myself. Kind to others. “ - Mean Baby
Anyone who has dealt with chronic illness, chronic pain, or autoimmune disease knows how hard it is to see your body change. Knowing that it is not yours. Having an incompatible relationship. Trying to listen to the rest it needs while trying to meet the demands. Recognizing that you cannot meet the demands of the high-pacing world we live in!
Giving yourself the grace to move with kindness is one of the best things you can do.
“Have you ever thought about Multiple Sclerosis?”
My chiropractor (hi, if you are reading this) was the person who asked me this question. Here are some of the reasons she asked if I have considered it… my:
Numbness and tingling in my fingers and toes (sometimes my shins, and forearm)
Weakness swallowing (I have yet to admit this on the blog, and this has been hard to wrap my head around as a speech-language pathologist)
Neck weakness
Neck stiffness
Shooting pain down limbs
Extreme fatigue (falling asleep between sessions even after 8 hours of sleep)
Depression and mood swings
I have noticed slight changes in speech (another insecurity of mine) and just a little more clumsiness than before. I had an MRI last year to rule out MS, and a ton of blood work to rule out other autoimmune diseases. I received a CT scan after my emergency room visit in September, and am now looking at getting another MRI to see how my neck is.
I am not looking for sympathy. I feel so much warmth putting this into paper. I feel like there’s a way of talking about what you are going through in hopes that people will know that they are not alone. It is hard to look in the mirror and conceptualize that this is what is happening to you.
“I hope I can help erase the stigma attached to MS, bring increased awareness to those living with disabilities, and help people who are coping with chronic illnesses—or even just the painful experience of being human—to realize they are not alone.” - Selma Blair
Please comment or email if you are interested in opening up a conversation.
