My first year of Multiple Sclerosis went by so quickly.
Year one of my Multiple Sclerosis diagnosis wrapped up about a month ago (I was diagnosed December 10 2008) and I’ve been reflecting on all the randomness and misinformation about the disease. As a lot of things in my life begin to come together (I’m growing up finally!) I find myself mourning the diagnosis more now than I did initially.
No one knows what causes MS and there is no cure. The idea of the cure is threefold: 1 – prevention of the disease, 2 – prevention of further progression of the disease, and 3 – reversal of disability caused by the disease. Theories are that those genetically prone to it may have it set off by exposure to a virus (probably the Epstein-Barr virus), that is is solely due to a vitamin D deficiency, and that a vascular disorder causes a backup of blood that leads to iron deposits in the brain. At any rate, the effect is that the immune system attacks the central nervous system, destroying myelin and the nerves that it protects. About 3/4 of all those diagnosed with MS are women.
For the newly diagnosed:
- Find a neurologist you like and trust. Don’t be afraid to switch.
- Most of your problems are invisible – don’t expect anyone to understand (sorry).
- Whatever feels unbearable right now will probably pass.
- Watch the webcasts, listen to the podcasts, and get Momentum magazine.
- Stay out of the heat at all costs.
- Holistic remedies are not proven to be effective. If it sounds crazy it probably is.
- Neurologic problems and muscle relaxers often lead to sleep apnea.
- Common MS symptoms are : fatigue, lack of balance, random pain from innocuous stimuli, spasticity, blurry vision, vertigo
- There are several types of MS. Relapsing-Remitting means you have an attack and then heal to some degree. Progressive means you have a gradual loss of ability that does not heal. Many of us with relapsing-remitting MS will develop progressive MS
- Deaths resulting from MS are usually caused by liver failure resulting from Interferon or by infection due to lack of mobility. In general your lifespan will not be shortened.
- You absolutely will never get the reaction you expect or desire when you tell someone about your diagnosis.
- No two people with MS will ever have more than a passing similarity of symptoms or progression.
- Caffeine makes all symptoms worse.
- You will eventually develop a sense of humor about what you’re going through. That doesn’t mean you won’t freak out from time to time.
- Cats are good for people with health problems. Really. My neurologist has a whole poster up about it.
- Everyone needs a “care partner.” Will (my husband) has been amazing to me. Amazing.
I had dealt with spasms in my right eyelid for about a year when I went to my optometrist. She decided that it was more than just stress and referred me to a lid specialist who treated me with 3 sessions of Botox injections over the course of nearly a year. Each time the Botox wore off the spasms would start again, so we pursued an MRI to check for nerve damage although the lid specialist didn’t expect to find anything. I have a family history of MS – my father has it as well as 2 of his sisters. The lid specialists said that he had about 20 new patients every week who needed Botox injections to stop those pesky eye twitches and none had ever had MS. In the time that has passed, I have noticed that I am not the only person who had persistent eyelid issues prior to diagnosis or during their first year of Multiple Sclerosis.
Being extremely claustrophobic I requested an open MRI. Having now had both an open and closed MRI I just recommend the closed one. Open MRIs are really not that “open” and take less detailed images. The MRI takes a long time, the contrast fluid feels terrible, and when you ask the tech if they see anything unusual they will lie badly. The machines bang pretty loudly. You have to keep your mind occupied during the hour or two you’re in an MRI – being fascinated with myths I think I told myself the story of Isis and Osiris both times.
When I filled in the pre-MRI paperwork there was a list of things that can be caused by the contrast fluid – difficulty speaking, walking, etc. As I got out of the machine I felt immediately odd and discovered that when I tried to talk I couldn’t pronounce words correctly. Over the next few days my pronunciation deteriorated as did my handwriting and balance. From an outsider’s perspective I’m sure I seemed drunk. I began to think this was more than just the contrast fluid. We went to Virginia to visit Will’s brother, sister-in-law, and newborn nephew that weekend and I found myself having trouble with everything from brushing my hair to applying mascara. I was afraid to hold the baby much in case my arm betrayed me. On the drive back my arm suddenly became weak. Within the next 2 days I had paralysis in my right arm and hand and in parts of the right side of my face.
When I returned to work I was faced with a voicemail confirming my MS diagnosis, a referral to a neurologist with an appointment in an hour, and an email sent to my employer’s mailing list about a coworker whose wife had taken her own life because of MS the previous weekend.
Filling in endless paperwork is great fun with a mostly paralyzed hand. The best way I can describe this is if you’re holding the eraser end of a 2 foot long pencil. Typing and using a mouse were nearly impossible. No one could understand me when I talked, and I couldn’t write legibly – communication was difficult for weeks. My initial research told me that MS was a painless disease and that it doesn’t decrease your lifespan. That people who live near the equator don’t get it. That 15% of people with MS commit suicide. That 400,000 people in the US are diagnosed with it. Don’t tell your boss about it, and don’t expect anyone to give you the reaction you want when you tell them about it. There is a difference between MS symptoms and an MS attack. MS Symptoms : fatigue, lack of balance, random pain from innocuous stimulus, spasticity, blurry vision, vertigo, etc. MS Attacks (or exacerbations) : When a new, more permanent symptom occurs suddenly and lasts for more than 24 hours (like paralysis, muscle weakness, blindness, etc). I learned that there was something called an “MS Hug” but couldn’t figure out what that was. It sounded cute!
I had to tell my boss. I would be fired unless I explained why my productivity halted and I seemed drunk. MS can ABSOLUTELY be a painful disease (although it isn’t always). And a recent study reports that about 1 million people in the US have some form of paralysis from MS, so there must be far more than 400,000 Americans living with Multiple Sclerosis. The first worry I had was that I would be such a burden on my husband. How long could I work? Only 30% of people diagnosed with MS can work, and even if I could how much worse will his life be with a disabled partner? My father has MS and so do I. Will my brother be the next to be diagnosed with it? My nieces? Then I worry about healthcare. When something like this happens to you the health insurance industry looks VERY different very quickly. I find myself with a huge crush on Britain’s healthcare system. Since Obama’s election stem cell research has made vast leaps. What happens next election if it’s suddenly banned (again) and our greatest hope for a cure vanishes (again)?
My first neurologist was dismissive, unhelpful, rude, and racist. After my first appointment with him he had me begin a steroid infusion on-site. The Solumedrol burned like fire going into my veins and made me taste metal for hours afterward. As I walk out I grab what looks to be a very encouraging publication on MS. Turns out a woman is celebrating all that she’s gained from a life of MS : a husband who has been there for her after she lost her house, most of their furniture, turned to welfare, and she can no longer leave her bed. Whoever approved that article needs to be flogged.
As new nerves began routing I could gradually speak more clearly and write a little better, but progress was like watching grass grow. Suddenly my fancy new nerves turned mutinous. While I didn’t have strength enough to hold up a toothbrush with my right hand I would have a cramp that would close my fist so hard I made my own palms bleed. When I was in crippling pain 5 – 7 times a day with unbearable muscle cramps all down the right side of my body he shrugged and said maybe we could do another MRI. Then he found occasion to ridicule Native Americans after noticing on my chart that I am part Cherokee.
I discovered there was another neurologist nearby and promptly switched. He reviewed my MRI and told me I had 4 lesions but that I should get a spinal tap to be certain that my insurance would pay for treatment. He prescribed Baclofen (a muscle relaxer) for the muscle spasms.
The spinal tap was interesting. I thought it would be quick but it was not. He made sure Will was sitting down because apparently husbands tend to faint during the process. He painted my back with something – iodine maybe? He joked about how he was a great target painter. I asked how his aim was. He said not to worry about that. Spinal taps feel crazy. Having a needle jammed between your vertebrae feels exactly like having a needle jammed between your vertebrae. The metal conducts electrical signals which shoot down your legs. You have to wait for fluid to slowly drip out until several vials are filled. Spinal fluid is basically blood without the clotting agent. With no clotting agent it takes a long time to heal and may continue to leak out after the tap (this is why headaches are common afterward).
Baclofen was a mixed blessing. Starting it caused the cramps to worsen dramatically. In one day I was wracked with spasms more than 30 times before I went to the ER. After ramping it up for several weeks I still had muscle spasms and cramps, but not in the unbearable way I had before. Baclofen made me drowsy and loopy. I fall asleep multiple times a day and it was a month before I could safely drive a car. I began taking Rebif which is a disease modifying drug. This means it lowers the occurrence of MS attacks (by about 30%). Without insurance coverage this would cost me about $7000 for a 3 month supply. With my insurance it costs $200. They sent a local nurse out to show us how to use it, and it comes with an auto-injector. Feels like a bee-sting going in, burns like poison once it’s under the skin. The injection sites look like I’ve been hit by a baseball. I give myself injections Sunday, Tuesday, and Thursday. The cats have learned to stay upstairs while I do this. Will has learned to wait till it’s over to ask if I’m okay.
The healing process was very slow. Over time my handwriting returned to something like normal. Because I was using new nerve routes, there were times when addressing an envelope or writing out a check left me breathless and exhausted. I had been damn good at guitar hero (in my humble opinion) but my lack of coordination now relegates me to Easy Mode. I realized how much time I had wasted not writing, playing piano, drawing, etc. when I had the ability. Research had taught me that any lingering damage a year after an exacerbation is probably permanent. My first year of Multiple Sclerosis was also spent hoping that strength and dexterity might return. Some has and some has not.
In autumn I finally learned what the MS hug is and it is not cute. It feels like you’re being squeezed to death and the pain is so intense it causes me to vomit. I nearly cried with joy in the ER when they brought out a tray of 7 (SEVEN!) mystery vials to knock me out with. I never even felt them put in my IV. The cure for the MS hug? Lots of Valium. Lovely, lovely Valium.
Less than a year after my first attack, which apparently began literally inside the MRI machine, I had a second attack following a bout with the flu. Apparently the flu or a viral infection often precedes an MS attack. This time it mostly hit my right leg which leaves me unable to walk far. Instead of having on-site steroid infusions I was sent to a local hospital’s infusion center for it. They are great. You get a nice little room with a TV and they dilute the stuff in a solution which isn’t painful at all and hardly tastes of metal. My recovery thus far has been like lightning compared to my first attack.
That brings us up to speed. It’s not fun to live with and, at least for me, the daily symptoms are more of a nuisance than the exacerbations. There are things I can do to help myself that I don’t. But I’m going to. New Year’s resolutions usually fall by the wayside, but here goes anyway :
- Regularly practicing Hatha yoga improves balance and reduces spasticity. Mindfulness exercises such as this also improve your outlook and focus in daily life. I will (for real this time) start a yoga routine.
- Meditation and guided imagery help reduce the stress and improves the mental outlook for those with MS. I will (for real this time) start a meditation routine.
- Eating certain foods that reduce inflammation may contribute to less frequent MS attacks. I will (for real this time) start following a diet.
- Stress can lead to psuedo-attacks. I often joke to Will : “Don’t make me angry! You wouldn’t like me when I’m angry! My vision goes blurry and I fall down a lot!” I shall strive for apathy when people let their toddlers wander into the street or bicyclists scrub my car when weaving through stopped traffic.
Hopefully these changes will help slow my progression of the disease. More information is available on almost a weekly basis about MS, and misinformation is probably even more common. As I weed through it all I will post the gems here. Let’s all hope for a cure soon — or even three!
What is your MS story?