In my Daily Life with MS, the more we learn, the more we know

https://www.youtube.com/watch?v=fgIsUiT2dug

According to legend, if you say the name Beetlejuice three times fast, the magical trickster himself will appear before you. Let’s reverse that. Wouldn’t it be great if we could say MS three times fast to erase the existence of this ridiculous disease? I'm pretty tired of my personal trickster.

Since the Monster refuses to be exorcised, the best thing we can do for ourselves is to learn more about it. Pushing aside the negativity of multiple sclerosis, its history is kind of fascinating. As recently as the 1950s (in the realm of history, that really is recent; or I’m really old), they subjected people exhibiting inexplicable neurological symptoms to inhumane “cures”.

Photo by Gabriella Clare Marino on Unsplash

The MonSter was first detected as early as 1300, but not assigned a label until the 1800s when the medical field recognized the mysterious symptoms of MS a nervous disorder (paraplegias). One doctor in London noted in a lecture that the disorder was not sufficiently interesting to discuss further. (Probably a world-class jerk.)(https://multiplesclerosis.net/living-with-ms/history) I beg your pardon!

Do you have a love/hate relationship with your MS meds? In the early days of neurological experimentation, patients were subjected to some crazy remedies:

Herbs, some highly toxic
Chloroform
Electrotherapy
Hydrotherapy
Arsenic
Bleeding/leeches
Cooling with sponges, spa baths
Silver nitrate, topically or through IV
Potassium iodide

As science advanced, doctors studied cells and discovered the origin of myelin. When Dr. Thomas Rivers found MS was caused by changes in the nerve tissue rather than a virus, research took a more advanced turn. The National Multiple Sclerosis Society was founded in 1945, which led to the establishment of the National Institute of Neurological Disorders and Stroke. (Prior to official diagnosis, I was treated as a stroke patient.)

CT scanning and MRI (magnetic resonance imagery) became a standard evaluation of the existence of the MonSter. The emergence of corticosteroid therapy (steroids) was and remains a common treatment for suspected multiple sclerosis.

If you’ve been diagnosed, it's no big mystery that you are your own best advocate. Doctors are wonderful resources, yes. We depend on the medical profession, as we should. Without the dedication to the practical knowledge of professionals, we might still receive electrical shock treatments or burned at the stake like a Salem witch. Although we still own a fear of the unknown, facts are easier to find out in the 21st century. (Fingers crossed.)

The more we know, the better armed we are for defense. There is always room to learn.

Recently, my neuro and I agreed that it’s time to change my DMT(disease-modifying treatment). Of course, this requires a fresh series of medical tests and prescription research. To this point, I have used Beta Seron, Tecfidera, Copaxone, and Gilenya to battle the MonSter. Kesimpta is my new drug of choice.

While reviewing recent test results, I found that I am positive for JCV. My heart stopped. A positive JC virus result means I am at a higher risk of developing PML. (progressive multifocal leukoencephalopathy).

Shaking yet?

Before crumbling into a ball of sodden tissues, I (FRANTICALLY) messaged a nurse (and MS Warrior) friend. Her words reassured me.

“Don’t freak out. Just about every person in the world has a positive JC virus. Mine is high as well, that just means certain MS medications are riskier. However, it is good to know where you are so you can make informed choices.”

Thank you, Jane! (Proof that human support is essential.)

The take-away?

This is YOUR disease. Read. Converse. Learn. No question is a stupid question.

JC virus and PML

The JC virus is a common infection completely unrelated to MS. Between 40-90% of the general population have been…

mstrust.org.uk

There are so many MS resources out there. Penelope Conway is one of my favorite MS bloggers.

I wish people knew

June 28, 2022/1 Comment/in Positive Thoughts/by Penelope Conway

I wish people knew that I don’t discuss my living with multiple sclerosis for pity, sympathy or attention. I talk about it because it’s a huge part of my life, whether I want it to be or not. I discuss it to help others who are dealing with the same hurdles and the same monster as me.

I do so to inform, to educate, to be matter-of-fact, and to explain. Just to be real. Not to get pitied, babied or fawned over. Certainly not to be look down upon or judged.

I know I don’t have a terminal disease, but I have been diagnosed with a condition that will only get worse. And no matter what anyone has read about, it can’t be cured. Yes it can be managed but not removed from my life entirely. And just so you know, managing it is not always able to be done. For some people diet helps. Some it doesn’t. For some people supplements help. Others it doesn’t. It’s a trial and error type thing that sadly for me tends to be more error.

I am not lazy. Sometimes I am cranky. Some days I can barely get out of bed. It’s because I am in pain every day of my life, yet I continue to smile even through the tears.

So please don’t tell me to just snap out of it. MS isn’t something a person can snap out of. And please don’t judge me when you have no idea what I am going through.