What is it like to have MS?

March is MS awareness month so I figured I would share a little bit about it.

What is it?

MS is the abbreviation for multiple sclerosis. It is a progressive neurological disorder. It is a potentially disabling disease of the brain and spinal cord (which is your central nervous system). In MS, 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.  I know that can sound confusing.

Picture the cord that charges your cell phone. Sometimes the hard-plastic coating on the cord cracks. When that happens, a little bit of the wiring underneath gets exposed, and the signal gets messed up. So, your cell phone may not charge at all, or it might charge then stop, then charge, then stop. The intermittent function causes the phone to beep, go quiet, beep, go quiet, ad nauseam, until you quite literally rip it out of the wall and throw it in the garbage. If I do say so myself, this is an excellent, broad analogy for MS. The myelin sheath I wrote about is represented by the cell phone charging cord in my example. When your immune system attacks protective myelin, it basically cracks the myelin, creating ‘spots’ that are called lesions. The incredibly annoying intermittent charging indicator is like the nervous system signals that go haywire.

What causes MS?

So, what causes MS? After much intensive research, still nobody knows what causes this soul sucking mess. A common theory is that it happens when a perfect storm sort of series of events take place – Like having low vitamin D, being exposed to certain viruses, and exposure to some environmental factors. MS is classified as a rare disease. It would be nice to be known as a rare gem, a rare wit, a rare human being, a rare friend. Winning the “Here, you can have a rare disease” life lottery is definitely not nice.

(If you don’t recognize this meme character, your Gremlins movie game is weak, and Stripe will explain it to you).

I once had an eminent neurologist tell me that if the lesion on my spine was a couple of millimeters over, I probably would never have known I had MS, and would be walking fine. I am not a violent person by nature, but I sincerely wanted to punch him in the throat. To this day I can’t imagine why he thought it was a good thing to tell me that. It was like having somebody tell me, “Wow, you have no luck at all.”

What are the symptoms of MS?

So, what are the symptoms of MS? There is no easy answer to that because everybody is somewhat different, depending on where the lesions are located, as I already explained. MS affects everybody that has it differently. It is a “your mileage may vary” kind of thing, as are many chronic conditions. Women and men both get MS, although mostly women suffer from it. Symptoms are the same for both. The symptoms and severity of anyone’s MS depends on where the lesions are (the spots in the myelin I explained about).

These are some of the most common symptoms:

  • Electric-shock sensations that occur with certain neck movements.
  • Tremor, lack of coordination or unsteady gait
  • Prolonged double vision
  • Blurry vision
  • Slurred speech
  • Fatigue
  • Dizziness
  • Tingling or pain in parts of your body
  • Problems with anything and everything you can imagine

Some people with MS have all of the symptoms almost all the time, some people have one or 2 symptoms, very seldom. You may work or go to school with somebody who has MS and never know it. And some people, like me, are basically trapped at home all the time.

Is there a cure?

No. There are treatments at least, that are supposed to slow progression of the disease, and reduce the frequency of flare-ups of symptoms. Flare-ups are also known as relapses or exacerbations. Flare-ups can be triggered by getting the common cold or the flu, having an infection anywhere in your body, stress, extreme temperature changes, and other things. Sometimes a flare up will happen and there is no way to explain why. I battled back to being able to walk 3 different times. After each time, a flare up or flare ups eventually made me worse and unable to walk again.

Over the years I have been on injectables Avonex, Betaseron, and Rebif. I have done the intravenous medication Novantrone twice, and Tysabri 24 times. I have done stem cell. And infused Solumedrol. Monthly treatments of Intravenous Immunoglobulin (IVIG), each lasting about 8 hours. Oral Prednisone. Vitamin therapy. The Swank Diet and other strict food regimens. Prayer. Meditation. Healing music. Acupuncture. CBD oil. Had my Chakras aligned multiple times. Crystal energy treatments. I have spent about 24 months of my life in hospitals and physical rehabilitation centers.

MS is not something I can heal if I try hard enough

All that, and yet I have had people tell me that MS is mind over matter, and that if I tried hard enough, I could get better. Many people have no idea how many medications, treatments and other things I have done and tried over the last 20 years.  Like many people wrestling with medical issues, I don’t exactly go around chatting about it. Until now, apparently!

I hope anyone who reads this might understand MS a little better now. I encourage you to share with me and anyone else checking in, any condition you might be dealing with! We can help each other better when we understand each other better.

8 thoughts on “What is it like to have MS?”

  1. Wow ! Sadly this is so real to see someone else say that which you encounter on a regular basis..because so many people have no idea…you feel foolish for thinking it’s a real thing! Sooo frustrating.

    1. Kathy, it is all too real, and frustrating beyond belief! I think it helps to know that we are not alone in this. Sometimes that’s even more important then the medications!

  2. I have it 25 years, early on, I thought I was toast, seems to have stabilized over the years, my left side -10% weaker than my right, pain my main issue, my eyes bother me when I get tired, some fatigue, but I’d say I’m one of the lucky ones, knock knock.

    1. Paul,

      Thank you very much for sharing. My physical limitations are awful, but I also try to see myself as one of the lucky ones because I don’t have any mental limitations caused by MS. Its wonderful you’re doing well!!

  3. I think, for the most part it’s difficult for people to fully understand the impact of an autoimmune disease, which I feel is important for those of us dealing with a rare autoimmune disease to speak out. I, also have a rare autoimmune disease, and when I was first diagnosed, I never heard of Vasculitis. Members of my family do have autoimmune diseases, but not any type of Vasculitis. I fall under the —I don’t look sick group. Outwardly, no one can tell I’m sick and I, struggle with others not taking into account that even with treatment, I can’t do things I used to do. I have a new normal.

    Thank you for sharing about MS, and your struggle. It helps to bring awareness to others.

    1. Allyson,

      I really appreciate you sharing about your struggles with Vasculitis, and how not every serious illness is visible I hope you never let people make you feel pressured to do what they want you to do; nobody knows your personal situation the way you do! Stay strong when you need to be, and yell or cry when you need to do that, too.

  4. I have Arnold-Chiari Malformation. It took 10 years to diagnose which sadly is the average time. It mimics so many other disorders/diseases especially MS
    The only doctor I hadn’t seen was a neurosurgeon who diagnosed me right away. He told me I was probably 6 months away from being paralyzed so that was a God Given moment. I had my 1st brain surgery in 2002 then again in 2011. Post-Op I was doing okay as I had an awesome aide for 9 months but couldn’t afford it anymore. I’ve slowly gone down hill with no help. That’s a big part of having a disability, the financial part of it. Yes, I’m on social security disability but that’s not wayyy enough to live on especially when not Medicaid eligible.
    Keep these posts coming everyone as we all help each other
    “ We’re NOT Alone “ !!

  5. Found your post interesting to read. I can not wait to see your post.
    Good Luck for the upcomingupdate. Thiss article is really quite interesting and effective.

    King regards,
    Thomassen Schneider

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