Multiple Scler-what?
Heck, I have the hardest time even pronouncing Multiple Sclerosis, how is anyone supposed to know what it is? When I tell people that I have a MS, I get a range of reactions, followed by, I am not even sure I know what MS is. Fair enough, I didn’t really know much about it either when I was diagnosed. I will do my best to explain what it is, but please know I may be missing important details, as it is a complex disease.
What is Multiple Sclerosis?
Multiple Sclerosis is an autoimmune disease that attacks your central nervous system (brain and spinal cord) by mistake. When someone with MS has a “relapse” or “episode” the immune system starts attacking myelin, a protective covering over your nerve fibers. Without myelin your nerves are unable to work and respond properly.
People with MS have a range of symptoms and severity of disease. There are different types of MS including relapsing remitting (this is what I have and most people have), secondary progressive, and primary progressive.
The most common symptoms of MS include:
- vision problems including optic neuritis numbness in the body
- fatigue
- bladder problems
- bowel problems
- pain (stabbing, electric shock, burning, aching, prickling, squeezing, etc.)
- cognitive changes including depression, anxiety, and emotional problems
- muscle weakness or stiffness or spasms
- sexual dysfunction
- difficulty walking
- hormonal changes
- And other less common symptoms
Sounds like pretty much anything and everything, right?
Specifically Relapsing Remitting MS
Those who have Relapsing Remitting MS do not know when their body might decide to attack. Relapses can last anywhere from a week to months where the symptoms are intense and may need treatment to help the body go into a remission. Once your body enters a remission, you may not notice constant pain (sometimes there is permanent damage, but not always), but if you are stressed or if your body temperature increases you may notice some of your symptoms temporarily return.
When I had optic neuritis it lasted about a month and a half. It did take several weeks for the doctors to finally get me on some treatment, but once I was on treatment it started to slowly get better. My left eye is back to 97% with 20/20 vision (with contacts that I wore before) and my right eye is back to 100% with 20/20 vision. I notice when I go for walks (my body heats up) or get stressed that my vision will temporarily blur, but nothing like how bad it got with optic neuritis.
Treatment Options
Multiple Sclerosis does not have a cure, but it does have 15 treatment options (they continue to work on new options as some don’t work for everyone) for those with relapsing remitting multiple sclerosis. The treatments focusing on reducing the number of attacks on your central nervous system. They have found that the earlier treatment is started, the more hopeful the prognosis of the disease is for someone with MS because the goal is that treatment will delay an attack that might cause permanent damage.
What Causes MS? Who Gets it?
The cause of MS is unknown, but the common string between people who have MS have a combination of genetic factors combined with environmental factors. The main environmental factors being low exposure to sunlight, exposure to Epstein-Barr virus (commonly referred to as mono), childhood obesity, and smoking. Women are two to three times more likely to be diagnosed with the disease.
Unfortunately for me I did get mono in college and I probably have low Vitamin D levels since I live in Washington. Friends and family, go start taking your Vitamin D supplements now! Ask your doctor about the recommended dosage as too much Vitamin D can be bad for you (and cause you a stomach ache). I do not know if there is a genetic factor in my family, no one else has this disease, but I am guessing there must be something passed down along the way.
Diagnosing MS
It is not easy for doctors to diagnose MS. There are many diseases that they can run a blood test and confirm or deny whether you have the disease (I was tested on almost everything else). They can run a spinal tap, but these only come back positive for MS 80% of the time (I had a clear spinal tap). They can also run brain and spine MRIs to look for lesions to help diagnose the disease. Nowadays, and in my instance, they only needed the bare minimum to confirm my diagnosis. I had two small lesions in my brain. In the past, they would wait to diagnose once they saw continued and larger lesions in the brain, but this caused a delay in treatment for people and more permanent damage. Since my first two scans were clear after my first episode, they were confident this is classic MS.
Unique Disease
Please remember that MS is not the same for any two people. What your one friend may be experiencing may be completely different from another friend. That one horror story you have heard may not be your newly diagnosed friend’s fate (no need to scare them). The best thing you can do is learn about the disease and be prepared for unexpected challenges ahead.
Want to Learn More?
This covers the basics and explains my situation a bit better. If you are interested in learning more about the disease, I recommend visiting The National MS Society for accurate information regarding multiple sclerosis. Ironically, this is the same website that was recommended to me when I was first diagnosed.