… March is MS Awareness Month? That’s right! It’s Multiple Sclerosis Awareness Month.
It’s been far too long since I’ve posted. Since it’s MS Awareness Month, I thought I’d take a couple minutes to share a little bit about the disease and update you on how I’m doing.
MS is a disease of the central nervous system (CNS) – the brain and spinal cord – in which the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body. Eventually, the disease can cause permanent damage or deterioration of the nerves.
Multiple Sclerosis can take years and many tests to be diagnosed. One of the reasons for this is because the disease does not present itself the same way in each person. Plus, symptoms differ depending on the nerves that are affected. That’s what makes it so tricky to diagnose!
SYMPTOMS OF MS
Here’s a list of common symptoms:
- Numbness or weakness in one or more limbs that typically occurs on one side of your body at a time, or your legs and trunk
- Electric-shock sensations that occur with certain neck movements, especially bending the neck forward (Lhermitte sign) … OFTEN TIMES, THIS IS ONE OF THE FIRST SIGNS!!!!
- Tremor, lack of coordination or unsteady gait
Vision problems are also common, including:
- Partial or complete loss of vision, usually in one eye at a time, often with pain during eye movement
- Prolonged double vision
- Blurry vision
Symptoms may also include:
- Slurred speech
- Tingling or pain in parts of your body
- Problems with sexual, bowel and bladder function
I experienced the Lhermitte Sign at least two years before official diagnosis. I thought I had a pinched nerve in my neck. I sought chiropractic treatment and it went away. I never thought about it again until I had full-on CRIPPLING muscle spasms on the right side of my body that sent me to the hospital. I also had unexplained dizziness when I bent over. You can read my diagnosis story here: https://mightystrongandvictorious.com/2015/07/26/hello-world/
If you have any of these symptoms or unexplained symptoms, PUSH YOUR DOCTOR to do brain and spinal cord MRI’s on a 3T MRI machine AND a lumbar puncture. If you have lesions on the brain and/or spinal cord, the MRI will show it. The cerebral spinal fluid will have Oligoclonal Immunoglobulin Bands; the level most likely will be elevated if in a relapse.
Don’t stop until you get answers!
TYPES OF MS
Relapsing-Remitting MS (RRMS) — This is the most common type. It is characterized by clearly defined attacks of new or increasing neurologic symptoms. These attacks – also called relapses or exacerbations – are followed by periods of partial or complete recovery (remissions). During remissions, all symptoms may disappear, or some symptoms may continue and become permanent. However, there is no apparent progression of the disease during the periods of remission. RRMS can be further characterized as either active (with relapses and/or evidence of new MRI activity over a specified period of time) or not active, as well as worsening (a confirmed increase in disability following a relapse) or not worsening.
Secondary Progressive MS (SPMS) — SPMS follows an initial relapsing-remitting course. Some people who are diagnosed with RRMS will eventually transition to a secondary progressive course in which there is a progressive worsening of neurologic function (accumulation of disability) over time. SPMS can be further characterized as either active (with relapses and/or evidence of new MRI activity during a specified period of time) or not active, as well as with progression (evidence of disability accumulation over time, with or without relapses or new MRI activity) or without progression.
Primary Progressive MS (PPMS) — PPMS is characterized by worsening neurologic function (accumulation of disability) from the onset of symptoms, without early relapses or remissions. PPMS can be further characterized as either active (with an occasional relapse and/or evidence of new MRI activity over a specified period of time) or not active, as well as with progression (evidence of disability accumulation over time, with or without relapse or new MRI activity) or without progression.
Though there is no cure, there currently 22 disease-modifying therapies (DMT’s) that have been found through clinical trials to reduce the number of relapses, delay progression of disability, and limit new disease activity (as seen on MRI).
I started with Aubagio, then moved to Tysabri but developed neutralizing antibodies that prevented it from working. I only had 5 or 6 doses. After Tysabri, I received two rounds of Lemtrada one year apart. I am now back on Aubagio. My new neurologist, Dr B, wanted me to take Mavenclad but my absolute lymphocyte count is far too low. It has to be at least 1,000. Since the Lemtrada, the count hasn’t been above 500. That is one of the reasons I’m on Aubagio right now. We’re waiting on the count to increase. She has spoken to me about a clinical trial for a new drug. I haven’t decided what to do yet.
More therapies are being developed all the time. WHAT WE REALLY WANT IS A CURE!!!!
Perhaps if researchers could pinpoint exactly what causes MS, they could find a cure. They believe there are a combination of factors. You can read about them here: https://www.nationalmssociety.org/What-is-MS/What-Causes-MS
HOW AM I DOING?
Overall, I am doing well.
My last MRI in September showed no progression so the Lemtrada did its job. It halted progression. Part of the monitoring for Lemtrada is blood draws for 48 months after last treatment. I have 11 more months of monitoring to go. So far, so good! YAY!
My balance and walking are still affected. Mainly due to my right leg and foot. I use a mobility scooter to navigate wherever I go. (The house we are currently in is very spread out, so I use it in the house.) While I technically can still drive and go where I want, I choose not to. It is too exhausting plus I need the scooter, which I’m not able to maneuver on and off the lift gate on my own. So, I stay home tending to the puppies, taking care of the house, and keep myself entertained with my crafts. Oh yeah and make Skip’s dinner. LOL!!! I also help my Mary Kay Sales Director with preparing her unit newsletter and creating graphics.
I made an accommodation to my sewing machine operation. Rather than depress the pedal with my right foot, I now operate it with my right arm/elbow from the tabletop. Challenging at first, I do incredibly well with it now. Check out my Instagram (@vickiwayne) for pics of my projects.
I am trying to remain as independent as possible.
There are some things I need help with though. Most often the thing I need help with is putting my pants on over my feet and taking them off over my feet. Those two things are tough!!! Who knew????
My guy is a real trooper. He is hanging in there. I know it’s not easy … I know I’m not easy. He stands beside me, supports me, and only wants the best for me.
You know what???? I have hope! Hope that I’m going to recover and regain use of my leg and walk again without the use of assistive devices.