Being that it is Multiple Sclerosis (MS) awareness week, March 11-17th in the US (or month depending on who you talk to), I find it only natural to post on this topic here. After all, there are many of us living with this disease. If you don’t know, I have MS. I was diagnosed shortly after I turned 30. It has not been easy, but I’ve learned how to live with this disease.
What is Multiple Sclerosis? In Greek Latin, sclerosis means scars. Put the two together and you have multiple scars. MS is an autoimmune disease where the brain and important nerve tissues of the central nervous system (CNS) are attacked and scarred by the body’s own immune system. Yes, the body attacks itself. There are four types of multiple sclerosis; relapsing-remitting MS (RRMS), secondary-progressive MS (SPMS), primary-progressive MS (PPMS), and progressive-relapsing MS (PRMS). In a nut shell, people are usually initially diagnosed with RRMS, and can live with the exacerbation/recovery cycle for many years. Without interventions, the disease can progress into one of the later stages of MS. Meaning, a person may have an onset episode or exacerbation, but the recovery from the episode is minimal at best. Any person diagnosed with MS can have a quick onset or change of disease activity. Hence the reason why early interventions are highly stressed.
Many of us are thriving with MS,living well into our ’60’s and ’70’s due to the availability of better medicines and early interventions. It seems only natural, to not only hail the advancement of modern medicine’s interruption of multiple sclerosis’ disease progression in so many people, but also flat out hail the way interventions have slowed the disability progression when administered early on.
The auto immune disease family is interesting because it baffles some of the wittiest minds and doctors. Many specialists don’t know what exactly triggers the disease’s progression. There are about 2.3 million of us MS’ers worldwide. Multiple Sclerosis affects everyone, with women of eastern European decent having the highest prevalence in multiple sclerosis cases. It’s said to be genetic and MS usually shows up around age 15-40 due to the body’s response to habits and environmental factors.
In MS, researchers believe the body’s T and B cells are the attackers. They specifically target the fatty protective myelin sheath of our nerves. It’s a slow attack. Usually taking place over a period of time for most people. Often, the individual brushes off the numbness or pricks and needles and won’t know the assault on their body is even taking place. Then BAM, a major exacerbation. They suddenly can’t walk or one side of their body goes numb. Or, such as in my case, they develop a nasty case of optic neuritis and lose sight in one, or both eyes for a few days or months.
In my case, they told me some fluffy excuse, and my vision eventually restored itself over time. I didn’t have health insurance during this time, nor did I have a clue what multiple sclerosis was. I quickly found out how costly doctor and specialist visits were without health insurance. I’d later find out that two of my Eastern European 2nd cousins have MS. One is doing great (a woman) and one is in a nursing home setting (a man.) Unfortunately, I still have issues seeing as floaters and webs are now a permanent part of my line of sight.
I should have gone to the hospital during this time, but again…I had no health insurance, and no money to pay for a specialist. My experiences pretty much sum up what health care in the US pretty much looks like if you are not wealthy. Thankfully, my family was able to help me out some for doctors costs, but I probably should have received more in-depth care.
Anyhoo, a multiple sclerosis diagnosis usually takes time. Many times, the patient finds themselves in the hospital or being shuffled through a series of doctors, brain, and blood tests (that is, if they have health insurance.) The initial diagnosis are now via MRI and cogitative/mobility test function. The MRI acts as a baseline for charting disease activity. The battery of tests following typically allows doctors to suggest the proper Food and Drug Administration (FDA) disease modifying medication.
In my case, my MRI’s kept showing disease progression. This meant that my body was literally eating itself and the medications issued to me were not doing very much. It meant that I needed a more aggressive medication. Otherwise, the potential for my MS to get worse would likely increase quickly. This was not good. I ended up taking a total of three therapies before I chose to seek an MS specialist who recommended Lemtrada. I call it chemo-lite. It’s five days of IV therapy to wipe out those pesky T-cells. Then, three days of IV therapy one year later. It has been a very long, life changing journey that I will share in-depth at a later time.
The thing is, the disease progresses over time. I was officially diagnosed in October 2012 at age 30; although, I should have been diagnosed in my early 20’s. Now, every year after my diagnosis, on or around October, I get my annual MRI. It’s like a health ritual. Lying there in the tube is just as important as me getting my annual pap-smear or physical exam. I just do it.
Bottom line, upon diagnosis, the key element is getting symptoms under control and to limit diseases progression. This takes time, and a lot of lifestyle changes. Many individuals who have bad episodes will be hospitalized over a period of time with the potential for a stay in a rehab facility for months afterwards. The most common symptoms of MS are extreme fatigue, cognition issues, numbness, pain, bladder and bowel issues and loss of physical function. An exacerbation can worsen all or some of these symptoms. All sounds like a barrel of fun, right?!
Being diagnosed with multiple sclerosis today is not a death sentence. Doctors can intervene and potentially slow the onset of disease progression with early detection, managing stress and heat exposure, and implementing disease modifying medications. Yes, doctors 20-30 years ago would give this diagnosis (which patients back then had to undergo a painful spinal tap for MS confirmation) and treat the pain that’s associated with it, and basically say “good luck” send the patient on their way. Helpful, right? It doesn’t work that way anymore.
MS is getting a whole awareness week now! There are about 12 disease modifying drugs approved on the market. Some are in clinical trial mode and have not received Food and Drug Administration (FDA) approval here in the US. Not every therapy will be approved the same way in every country due to regulations and patient safety processes. However, the clinical trials for stem cell replacement therapies and immunotherapies have shown significant potential in fighting this disease. I’m so interested in seeing where these therapies take us in the future.