Multiple Sclerosis (MS) is one of the human body’s worst horror stories. Slowly, piece by piece, the body quits responding to the mind as the nerves become damaged. It’s inconsistent, with some days being better than others. Some days, the body seems to be in mostly working order. The next day, an MS sufferer may have had a flare, and the body no longer processes input from an arm or leg.
What is MS?
Your neurons are wrapped in a protective covering called the myelin sheath. With MS, the body attacks the myelin sheath, which slowly affects the ability for the body to transmit signals across those nerves. This affects both the ability to receive signals, such as touch sensations, and to send commands to the muscles. It can also affect mental health as the neurons in the brain are affected. In 2013, 2.4 million people were diagnosed with MS, and 20,000 deaths from the effects of MS occurred.
MS comes with four variants:
Relapsing-Remitting MS is the most common form and accounts for 85% of diagnosis. With RRMS, the disease gets worse off and on, staying the same for a while (remission), until the person experiences a flare-up (relapse), at which point new symptoms will appear.
Secondary-Progressive MS sees the diseases slowly get worse at a steady state, though the person may also experience periods of remission and relapse. A large number of people who were initially diagnosed with RRMS will eventually become diagnosed as SPMS.
Primary-Progressive MS only occurs in around 10% of MS patients. The disease slowly gets worse over time, with no relapses or remissions.
Progressive-Relapsing MS is a rate form where the disease slowly gets worse, and the person only has relapses and no remissions.
Two friends who currently suffer from MS agreed to be interviews for this article.
Candice is in her 30’s, is divorced, has three children, and runs a small business out of her home. Candice was first diagnosed with trauma induced epilepsy in 2004, and in 2006 experienced more complications. After multiple specialists, she was diagnosed with MS.
Morgan is also in her 30’s, married, has two children, and also runs a small business out of her home. Morgan was diagnosed in 2013 while attending college: “I had picked up migraine symptoms are a bit like a small stroke, weakening me on the right side, slurred speech, and loss of function on the right side. For a little bit, everyone, doctors included, though I was having mini-strokes, like 30 or 40 a day. I was in school, I had children, and I was being stubborn, I almost wrecked my car. I finally went to the doctor for testing – for strokes. CTS’s & MRI’s, the same testing you’d get for MS, but without contrast dye.” While they might have been looking for strokes initially, specialists finally nailed down a diagnosis of MS.
MS can be extremely hard to diagnose based on a single symptom, or even multiple symptoms, because of how wide-spread the disease can be.
- Problems Walking
- Vision Issues
- Hearing Loss
- Bladder Problems
- Bowel Problems
- Sexual Dysfunction
- Cognitive Issues
- Memory Problems
- Issues Talking
- Radical Emotional Changes
- Problems Swallowing
Pretty long list, right? But, that’s not everything. In fact, here’s the best way of thinking of it: if it involves your nerves or brain, MS can find a way of messing it up.
The Real Effects of MS
One of the big reasons I asked two friends to speak about their MS experiences is that it’s so easy to just give a list, but without really giving the full repercussions of a disease such as MS. Often, the symptoms of MS are “invisible” – the person with the disease experiences symptoms that the rest of the world can’t visibly see. When someone complains about fatigue, it’s easy to write it off as a lack of sleep. Lack of sleep is no big deal. But, with an MS sufferer, they’re talking about a different level of fatigue – one that can sap them of the energy to do anything for the entire day.
People also are sometimes unforgiving of the cognitive changes caused by the disease. Memory can be impaired, thinking can be impaired, and and even the ability to use the right words can be impaired. Morgan has a great term for that last part: “word salad.” “I mix up my words, and I lose words entirely, and I’ll get stuck. It’s called searching – if I can’t find a word, I’ll get stuck, and can’t continue until I find it again.” And, Morgan’s experience isn’t uncommon, and Candice’s example shows: “I had to yell downstairs to my daughter. What I thought I said was ‘Come unload the dishwasher.’ My daughter came up the stairs, laughing – what I had said was ‘Come unload the dictionary.’” Morgan, and her husband Michal, have dealt with the problem with a sense of humor, and have recently launched a Twitter account to share the funniest of her “word salad” moment.
Memory impairment is no small thing. “Biggest change in my life is a complete and total brain scramble,” Candice told me. “It’s not just that I became a space case. People would tell me ‘Oh, you just have 3 kids.’ But, you don’t understand: I used to have an eidetic memory. Now, the kids get irritated with me because I don’t remember things. I lose track of everything, including what I’m making for dinner.” This also has affected Candice’s social life. “It’s hard having people not understand that I’m not just blowing you off, I legitimately forgot. If it’s not in the calendar or on the phone, I forget things entirely. I’ve lost friends because they assume I’m just a complete and utter fake.”
What about the physical effect? I asked Morgan to explain to me what living with MS is like on a day-to-day basis: “It depends on the day. Everyday I wake up feeling different, which is a combination of my MS, migraines, and POTS. Somedays I wake up exhausted with right sided weakness, vision issues. Somedays I wake up tired, with my muscles feeling like I worked out all day the day before. I wear special colored glasses to block both the amount of light and certain wavelengths, otherwise I have auras. I have numbness on my arms, legs, torso, and face. I feel like I have bugs crawling on me randomly.”
While there is some understanding of what the disease does, there’s no firm root cause known yet. There are a number of theories for the origin over the years of study of this disease. Genetics may play a role in it: those with certain genetic markers run a higher risk of developing MS, but the disease is not directly attached to a gene – those without it may also develop it.
It may also be an outside agent causing the disease. Both microbes and viruses have been studied as a potential candidate for the cause of MS, but nothing is conclusive.
There is no official cure for MS at the moment, though some research has gone into some radical treatments that show promise. Two of these treatments are fairly dangerous – they involve completely stripping the body’s immune system. One such treatment, IAHSCT (immunoablation and autologous hematopoietic stem cell transplantation) is performed by taking stem cells from the patient’s bone marrow and preserving it. Then, they completely eradicate the body’s immune system through the use of chemotherapy drugs – this leaves the body without any knowledge that the myelin sheath was considered to be an “enemy”. They regrow the bone marrow using the previously harvested stem cells, and the body no longer feels the need to attack the myelin sheath. Though, as one might expect, having any period of time without a working immune system is a problem.
There are also other drugs and treatments in the works, but often many of these are dead ends, or just add to the list of treatments that slow the progression of the disease.
Morgan had some advice for anyone who’s dealing with MS: ““Feel free to call your medical professional, never feel like you’re being a pain. Your best bet is to advocate for yourself. That’s your primary job. If you don’t have a medical professional who can help you, find a new one.”[sc name=”disclaimer”]