Health update 2023: My multiple sclerosis journey

I’ve been hesitating to share this post because it’s been an emotional ride, but here it is. My neurologist called me on Friday, March 31, 2023, to confirm I have multiple sclerosis (MS) and that he was referring me to an MS specialist (neurologist who specializes in MS).

After a solid, almost two months of research on my part, he confirmed what I had suspected. The dots started connecting after 2/6/2023, when he unexpectedly called me (on my son’s birthday) to notify me of the results of the MRI I had on 1/30/2023. I hadn’t thought about MS in about 7 years, let alone contemplated it was the reason for the symptoms I had been experiencing.

In January 2022, I had an unrelated surgery. In about the second week of recovery, I noticed I was stuttering occasionally. It would be the first time in my whole life I’ve ever stuttered. You can read about my hysterectomy recovery blog series on my blog site, such as in the post: How it started vs how it’s going: 2 weeks post surgery.

I thought the stuttering was a reaction from the anesthesia. I’ve undergone several surgeries and have been told that I have trouble waking up from anesthesia. I told my gynecologist the issue, and she referred me to the neurologist.

MS is a complex, chronic autoimmune disease of which there is no cure. I am not a doctor, but this is what I’ve learned. It’s a neurological condition where the body attacks itself, particularly the myelin in the nerves, and the symptoms can be disabling. For many people, it can take years before MS is diagnosed because the symptoms can mirror other conditions.

The diagnostic criteria is specific – there has to be evidence in dissemination of space and of time. Usually, there have to be clinical symptoms, though some people are asymptomatic. An MRI has to show evidence of brain lesions and/or lesions on the spine. In some cases, a lumbar puncture (spinal tap) has to indicate evidence of certain proteins linked to MS – oligloconol bands. I had a lumbar puncture on 3/16/2023.

In about 2008 or 2009, I was diagnosed with a condition called optic neuritis, which is one of the first symptoms of MS. I was almost at complete vision loss, accompanied by excruciating pain. At the time, I was treated for three days (outpatient) with an intravenous infusion of steroids at the recommendation of an MS specialist.

He didn’t diagnose me at that time because the optic neuritis was one event in time. I was also sorely deficient in Vitamin D as discovered by my primary care physician, so he indicated my treatment would be high doses of prescribed Vitamin D for 3 months and then continued over the counter Vitamin D.

After visiting with this MS specialist for several years and several MRIs later, he recommended I pursue alternative therapies and lifestyle changes because my symptoms didn’t warrant being on medication that would cause me to be sicker than my symptoms. I did just that, moved on with my life, not thinking about MS, and was diagnosed with breast cancer some months after our last visit (roughly 2015 or 2016).

In the last 9 months or so, I’ve had emerging symptoms that I now realize are MS symptoms. These symptoms come and go: muscle spasms mostly in my feet, back, and rib cages, stiffness in my lower body, cognitive issues related to attention, concentration and memory, stuutering, some numbness and trembling, sensitvity to heat and cold, and blurry vision. These symptoms don’t come all at one time, but sometimes, a few occur simultaneously. The painful muscle spasms have been increasing.

I made up my mind before the 3/31/2023 call that I would accept whatever outcome I faced and deal with it. I want to live to see my grandchildren and grow old with my husband. My new MS doctor assured me that if I could survive cancer, then I could survive living with MS. I’m holding onto this hope.

Some light lessons I will share in the face of a health crisis is this:

  • Learn everything you can about the condition. I find it empowering and makes me less fearful.
  • Engage a small circle of friends and family, asking them to pray for you. You don’t want to go through it alone.
  • Slow your life down and take inventory of what needs to change. Something is going to have to change in your life in order to take care of yourself.
  • Amp up your self-compassion because you’re going through a lot. Let go of blame, shame, and the high demands you may place on yourself.
  • Let people help you. I learned this through my breast cancer journey. I’m no superhero. I need help.

I hope this encourages someone. I know it made me feel better because I don’t want MS to take over my life, control me, or make me hide. I want to learn to live with it and still have a full life.

I plan to share more of my MS journey in future posts.