Today, May 30, is designated as World MS Day, to bring awareness to the disease – one which I’ve been living with for almost a decade.
Multiple Sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.
Multiple sclerosis causes many different symptoms, including vision loss, pain, fatigue, and impaired coordination.
As if that isn’t bad enough, the symptoms, severity, and duration can vary from person to person.
The progress, severity and specific symptoms of MS in any one person cannot yet be predicted. I can still walk mostly unassisted, but I have friends with MS who are in wheelchairs.
Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease.
I was first diagnosed in 2009…well, I’m not sure “diagnosed” is the proper term.
I was hospitalized with a loss of control of the right side of the body, which at first they thought was a stroke.
Still without a definitive answer, I was waiting for my discharge paper work when a doctor I’d never seen came in and said: “The cause of your symptoms is you have Multiple Sclerosis. Here is some papers explaining what that is and I suggest you make an appointment with a neurologist for further information.” And then he left.
Ah…the joys of being uninsured in America.
I spent several years dealing with mild symptoms but not on any medication.
In 2012, I spent two months in the hospital because of heart, lung, and kidney failure, including three weeks in ICU on a respirator.
Then in 2014, I was going in for another heart surgery when the x-rays to check my lungs caught a mass in my abdomen.
Turns out I had stage 1 cancer of the uterus. By the time I had my cancer-removal three months later, it had progressed to stage 2 uterine and cervical and stage 1 ovarian.
Good news is the surgery was a success and we had done it before it spread to my lumph nodes. As a result, I only had to do radiation treatment instead of chemo.
Unfortunately, the radiation caused my MS to rear its ugly head and in the four years since, I’ve had to start taking meds to try and control it.
I tried Aubagio first, and hated it. I got all the side effects but no real relief.
I tried Techfidera, which did nothing either.
Then I got put on a new drug called Ocrevus, a once every six month I.V. treatment.
I. Loved. It.
While it was fresh in my system, it was almost like I didn’t have the disease.
As the six month mark approached for the next treatment, I was excited to be on something that actually worked for me.
Three days before my next dose, I got a call that my insurance company decided they didn’t want to pay for it anymore.
Insert many swear words. Many, many swear words.
I ended up spending the next six months on no meds at all. It was no fun seeing exactly how far the MS has progressed.
I can still walk on my own for short distances, but when I have to cover conventions or I want to visit a theme park, I have to use a walker for assistance.
My MS makes me completely exhausted and dizzy, as well. So when I walk more than 10 minutes, I have problems walking in a straight line, and sometimes even fall down.
My short-term memory is also horrible now, and I’m super-sensitive to extreme heat. Anything over 90 degrees triggers my MS and when it gets to 100+ degrees, like it has this weekend, I can’t go outside for more than a few minutes without feeling like I’m losing control of my body.
I started on Glatopia recently which is ok, but I don’t think it’s worth the three-times-weekly shots I have to give myself. The hurt so much and I have to ice pack the shot area after or it swells.
My neurologist keeps trying to get me back on the Ocrevus, but until then, I might just do without any meds. The positive effects of the Glatopia are not being balanced by the side effects and pain of use.
So anywhere that’s where I stand with my life with MS.
World MS Day 2019 finds me doing whatever I can to live my life with this disease. To make it a part of my life but not one that singularly defines me. Some days are better than others, but I’m learning to find a balance I can live with.
If you’d like to know more about MS, and it’s often invisible symptoms, visit nationalmssociety.org.
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