I took to the internet for the first time to research multiple sclerosis. My doctor had recommended most of my research be found on National Multiple Sclerosis Society (NMSS) because the information was reliable and an overflowing amount of details (as far as what the disease is, what you can expect, treatment, etc) could be found there. That’s where I set off.
As you know by now, I use my blog for myself. It serves as a stress reliever . . . a different form of a scrapbook . . . and now, as a way to keep my sanity. I need a way to record major information (mainly MS details that impact me and my diagnosis) in one place where I can easily find it any time, anywhere. Many times, I write on paper . . . and the paper never finds a home so it sits out until I get frustrated seeing the fading writing and throw it away. I also truly want to share my research details with someone newly diagnosed . . . or someone who knows a person newly diagnosed. As promised, there is a lot information on the NMSS’s website . . . and it can be overwhelming. Don’t get me wrong — It’s organized nicely . . . but . . . I figured, if someone who was newly diagnosed (or even told they could have MS), well the information I complied is (hopefully) more brief and not as scary. I know one reason (among many others) that I personally put off researching . . . It was because I didn’t know if I felt up to weeding through information that one, didn’t pertain to my diagnosis and two, may not have been something I could handle at the time. And at the time, I could barely handle air.
Before I start, I want to again say thank you . . . Thanks ahead for not making me feel like it’s a bad idea to post my research on my blog. I know — It’s my blog, and I’m well aware I can do what I want . . . but now that I actually have (some) readers (however few), I worry I’ll bore you . . . and you’ll leave me. That’s the last thing I want. So again, thank you for understanding my reasons why this is very important to me.
Also, thank you — to everyone who read my Diagnosis post before and gave me that time to just be myself . . . that is the ‘self’ before my diagnosis. It almost brings me to tears to hear how many of you questioned James because he took up my voice . . . how many of you wrote me sweet notes (which I take as being less confrontational) . . . and waited until right now to quietly whisper to me, “It will be okay. If you need anything, just ask.” It’s strange but that time allowed me to process . . . This week I’ve been a mental mess, often sobbing uncontrollably in front of James, just thinking of what may lay ahead. I guess until now, I avoided everything with the letters “M” and “S” attached to one another. I’m not necessarily ready to talk face-to-face now . . . but then again, I don’t think I ever will be. But I’m trying. I know people love me . . . and I want to help them, be there for them when they are concerned . . . even if their concern deals with me. Anyway, I just want to say thank you for letting me pretend to be normal, for allowing me time to ignore this disease . . . and now, for letting me open up — not only online, but if you want to talk face-to-face, I’ll be there too.
Here we go . . .
Multiple sclerosis is a chronic, often disabling disease that involves an immune system attack against the central nervous system (made up of the brain, spinal cord, and optic nerves). Symptoms range from mild (numbness in the limbs) to severe (paralysis or loss of vision). According to this, my first attack was severe.
Facts about MS:
- In the United States, there are about 400,000 people with MS. (That’s compared to the nearly 313-million U. S. population, according to U. S. News.)
- While it is not proven MS is on the rise, 200 more people are diagnosed each week.
- The disease is more common in women compared to men. This has scientists researching how hormones could play a role.
- Most people are diagnosed between the ages of twenty and fifty. While MS occurs in most ethnic groups, it is more common in Caucasians of northern European ancestry.
Major scientific theories about the causes of MS:
It is believed MS is an immune-mediated process (an abnormal response of the body’s immune system that’s directed against the myelin [surrounds nerve fibers] in the central nervous system). It’s important to note it’s unclear what causes this attack. More scientific — and interesting: MS damages the myelin and nerve fibers which interferes with nerve impulses traveling to and from the brain and spinal cord . . . that makes transmission distorted or interrupted. The disruption can vary depending on the damage, but this description is exactly what I felt was happening when I lost vision in one eye.
The disease is thought to be caused or triggered in genetically susceptible individuals by a combination of environmental factors:
–Environmental and industrial toxins
–Diet . . . which really has me wondering if my crappy overnight shift is affecting my health in more ways than one. Anyone who has worked irregular hours knows sleep and eating are mushed in this blurry cycle that’s repeated day in and out. For instance, I eat a very small snack in the morning then one meal . . . all day. This, coming from a girl who used to eat four large meals daily. Why can’t I eat more? Because this shift has made me overly exhausted . . . so much so that when I get home, I fall asleep . . . sitting up. Needless to say, between literally passing out like a person with narcolepsy, I am only able to stay awake long enough to eat one meal. Trust me, I love eating (given that I started a food blog) so if I could eat more . . . I would.
- Trace metal exposures
- Location. MS is known to occur more frequently in areas farther from the equator. Here’s the long (fascinating) reason: Epidemiologists (scientists studying disease patterns) think this has to do with vitamin D . . . which is believed to beneficially impact immune functions and may protect against diseases like MS. The human body naturally produces vitamin D when skin is exposed to sunlight so those who live closer to the equator are exposed to larger amounts of sunlight year-round. Therefore, those people tend to have higher levels of vitamin D. This theory is being studied right now in Australia.
- Infectious viruses or bacteria that occur during childhood.
While MS is not technically hereditary, there is an increased risk for developing it if a close relative (parent, sibling, or child) has the disease. In a general population, the risk of developing MS is 1/750. For those with a close relative, the risk increases ‘several-fold above the general population . . . making it be 1/40. This is startlingly more than what Dr. Thurston had told me. Further, I still wonder what caused this disease in me because (looking at genetics alone) no one in my family (immediate to distant relative) that has been diagnosed.
***With all of these theories, studies have not produced clear evidence for any of the causes of MS.
I believe I have clinically-isolated syndrome (CIS) which is when a person has experienced only one attack of MS-like symptoms. A person with CIS may or may not go on to develop MS. If they do, then they will have one of the four disease courses which range from mild, moderate to severe. Of the four disease courses, most fall under this one:
This deals with “attacks” (or relapses/flare-ups) that can worsen. This stage is followed by partial or complete recover periods (remissions) during which no disease progression occurs. About 85% of people are initially diagnosed with this . . . which means I’ll more than likely jump to another stage of MS in the future — that’s if I have another attack.
***Since no two people have exactly the same experience with MS, the disease courses may be different from person to person and not always be clear to the physician, mainly in the beginning.
There are many, many symptoms of MS, but the below are ones I found most interesting because I’ve had them practically my entire life:
Fatigue is one of the most common symptoms, occurring in about 80% of those with MS. I have always been overly tired. In fact, growing up, I’ve been tested for Mononucleosis (Mono) multiple times . . . each with a returning result of negative. I wonder now if I may have had MS earlier in life and never had an episode until something triggered it now.
- Emotional changes
Emotional changes are very common in MS. Most often this results as a reaction to the stresses of living with an unpredictable illness. Severe depression, mood swings, irritability, and episodes of uncontrollable laughter and crying (called pseudobulbar affect) pose significant challenges for those with MS and their family members. I’d rather not get into my mood swings . . . (My poor mom when I lived at home . . . )
Less common symptoms:
Some reports suggest that people with MS have increased headaches. Growing up, I had intense migraines where sound, movement, light — anything would truly leave me crippled. Over the years, my migraines grew less severe, turning instead to horrible headaches. Again, the question is: Were these symptoms related to MS all along?
***Over the course of the disease, some symptoms will come and go, while others may be more lasting.
In order to make a diagnosis of MS, the physician must:
- Find evidence of damage in at least two separate areas of the central nervous system
- Find evidence that the damage occurred at least one month apart
- Rule out all other possible diagnoses
In 2001, the International Panel on the Diagnosis of Multiple Sclerosis updated the tools for making a diagnosis to include:
- Evoked potential tests
These tests measure the brain’s electrical activity when stimulating specific sensory nerve pathways. Basically, patients sit in front of a machine and either see a test pattern on the screen (such as an alternating checkerboard), they hear a series of clicks in each ear, or are administered short electrical impulses to an arm or leg.
- Cerebrospinal fluid analysis
- Blood tests
***The last four are used now to speed up the diagnostic process.
There is no cure for MS . . . but the Food and Drug Administration has approved what’s called disease-modifying agents (which is a fancy word for medications). These meds are known to be the best way to modify the disease course, treat and reduce attacks/relapses/flare-ups and future deterioration, manage symptoms, improve function and safety, and provide emotional support. Because permanent neurologic damage can occur in the earliest stages of MS, doctors believe it is important to confirm the diagnosis so that the appropriate treatment(s) can be made as early as possible. The medications recommended for me from Dr. Thurston are the following:
- Avonex (also known as interferon beta-1a)
This medication is manufactured by a biotechnological process from one of the naturally occurring type of protein. It is made up of exactly the same amino acids (major components of proteins) found in the human body.
In clinical trials for those with relapsing MS, people were given Avonex and a placebo. Compared to the placebo, Avonex:
- Reduced the risk of disability progression
- Caused fewer attacks/relapses/flare-ups
- Reduced the number and size of active brain lesions (patches of inflammation in the central nervous system; relates to ‘white matter’)
- Significantly delayed the time to a second attacks/relapses/flare-ups
It is an intramuscular (thigh or upper arm) injection given once a week. That means pre-filled syringes with powdered formations. The FDA has approved a gradually-increasing dose schedule for people starting the medication; this is designed to reduce the incidence and severity of flu-like symptoms that occur. The schedule for dose titration is as follows:
- Week One: 7.5 micrograms (1/4 dose)
- Week Two: 15 micrograms (1/2 dose)
- Week Three: 22.5 micrograms (3/4 dose)
- Week Four: 30 micrograms (full dose)
It is recommended to take Avonex before bedtime.
- SIDE-EFFECTS (Here’s the laundry list)
- Flu-like symptoms (runny nose, fever, and [as my doctor described] “a general feeling of ick”)
According to doctors and research, this is fairly common side effect during the beginning weeks, and this side-effect lessens over time. Many have found that over-the-counter pain and fever reducing medications can help. (Add on the medications . . . )
- Loss of interest in daily activities
- Low self-esteem
- Poor concentration
- Eating and sleep disturbances (as if I need more of that)
- Suicide (fabulous med, right?)
- Seizures (it gets better . . . )
- Blood problems (hell, a nerve problem isn’t enough . . . let’s have this too!)
- Flu-like symptoms (runny nose, fever, and [as my doctor described] “a general feeling of ick”)
- LESS COMMON SIDE-EFFECTS
- Depression/on-going sadness
- Mild anemia
- Liver abnormalities
- Allergic reactions
- Heart problems
(*Whew* . . . )
- Copaxone (also known as glatiramer acetate)
A synthetic protein that simulates protein . . . which insulates nerve fibers in the brain and spinal cord. Copaxone seems to block myelin-damaging cells, but it is not completely understood. This is light-sensitive so it cannot see light before and after injecting.
In controlled clinical trials with relapsing-remitting MS, there were again two groups: one with this medicine and one with a placebo. Those with this medication had a significant reduction in:
- Annual relapse rate
- New lesions
It is injected subcutaneously (between the fat layer just under the skin and the muscles beneath) once a day.
- Injection-site reactions (swelling, developing a hardened lump, redness, tenderness, increased warmth of the skin, itching at the injection site)
- Flu-like symptoms (seen above on Avonex)
- Unusual tiredness or weakness
- Weight gain (Sign me up!)
- LESS COMMON SIDE-EFFECTS
- Vasodilation (dilation of blood vessels)
- Chest pain
- Reactions immediately after injection:
- Chest pain
- Shortness of breath
(I would rather skip all . . . after each injection . . . every single day.)
***The immediate reactions lasts 15-30 minutes, typically pass without treatment and have no known long-term effects.
***With both Avonex and Copaxone, you are supposed to:
–Use a different injection site at least once a week.
–The auto-injector/pre-filled syringe should be stored in the refrigerator until 30 minutes before to use.
- Aubagio (also known as teriflunomide)
Trying to decipher this medicine-lango was harder. This medicine is a compound that inhibits a key enzyme required by whittle blood cells . . . which in turn, reduces functions of specific immune cells that have been implicated in MS. It also inhibits the production of immune messages chemicals by certain cells.
This is the “new” medicine Dr. Thurston told me about. Used to treat relapsing forms of MS, it was approved by the FDA in September 2012. Clinical studies were done with three groups — one with a high dose of Aubagio, another with a low dose, and third with a placebo pill. Here’s what happened:
- Aubagio reduced relapses compared to the placebo over 108 weeks
- Higher doses slowed progression of disability
- Both doses had a favorable effect on several MRI measures (smaller increase in total lesion volume and fewer new and active lesions)
This is a pill (7 mg or 14 mg) taken orally every day, with or without food.
Keep in mind, Aubagio has not even been around for three months; however, research shows it is “generally safe and well tolerated” with the below common side-effects:
- Hair thinning
- Abnormal liver damage
- LESS COMMON SIDE-EFFECTS
- Unusual numbness or tingling in the hands or feet (paresthesias) (Isn’t this what we are trying to defeat?)
- Lowered levels of white blood cells . . . which can increase the risk of infections
- Increase in blood pressure
- Severe liver damage (gotta love when doctors write the word “severe” and “damage” together)
Treatment: Complementary and Alternative Medicine
The word “complementary” refers to using conventional medical and alternative treatments. Here, a wide-array of therapies can be seen:
- Food supplements
- Stress management strategies
- Lifestyle changes
- Relaxation techniques
- Traditional herbal healing
- Chinese medicine
I’m not sure what’s right for me. On one hand, I see a large amount of side-effects with the drugs . . . some, with worse side-effects than MS. Therefore, I don’t know why I would put my body in a negative atmosphere and expose myself to a situation that could be worse than what I’m in already.
On the other side . . . I want (desperately) to avoid any chance that something bad will happen again . . . so medicine seems to give that little faith, that slight chance. This may be cowardly of me to admit . . . but I am scared — terrified — to death to be in a wheelchair. I’ve been overly active all my life. You’re talking to a girl that spent her life outside; I didn’t watch TV until she was in college . . . and only then because she was forced to view after her roommates left the TV on twenty-four/seven. I was the type who stayed outside, exploring, playing face-to-facewith life. I feel as if I need to run marathons now, jog multiple times a day, go backpacking now, take trips, see and experience the world, fulfill every dream . . . quickly . . . before my chance may run out.
For more information on the disease-modifying treatments discussed, visit the companies’ websites:
For more information on other disease-modifying treatments, see the full list:
National Multiple Sclerosis Society.