DANCING WITH MS Vol1. – The Beginning of a Journey.

I want to share with all of you who come to my website, my MS story. We are together in this journey with our uniqueness. If you are an MS patient or your loved one is MS, we will find a way to communicate with each other. The hardest days were the first diagnoses. After that, the road is clear except with small stones 🙂 You will keep up.

“We always celebrated New Year’s with our families, but in 2013, we decided to celebrate with friends for the first time. I wish we hadn’t because, for a long time, I referred to this party as “cursed 2013.” 

The evening was fun, no problem there. However, in the months that followed, I was diagnosed with MS, my close friend had serious surgery, and another almost got divorced…

They didn’t immediately tell me I had MS. Like any Turkish person, I delayed going to the doctor. Thankfully, I didn’t wait for months, ‘just’ a few weeks(!).

My husband John (💜) and I started going to the gym together after the New Year’s party. We thought, “Let’s motivate each other,” especially since it was only our third year of marriage; we had to do everything together (and still do!). Unfortunately, I never liked the gym, so I would say, “Wow, I’m tired,” and sneak off to the pool. John, God bless him, never complained.

I thought I caught a chill one day when I felt numbness around my belly. This numbness spread to my back, wrapping around like a belt. I blamed the pool chlorine, an allergy to my long-unused swimsuit, and even the soap in the gym showers.

One evening, when I said to John, “I think I’m starting to lose feeling in my toes,” we immediately made a doctor’s appointment for the next day.

We learned it was a neurological issue after some online research, and John, being thorough, booked an appointment with a Neurologist.

We had no idea what MS was at the time. With this event, MS was slowly creeping into our lives…

During the neurological exam at the private hospital, the doctor said, “I think I understand, but I need an MRI for a definitive diagnosis.” 

So, off I went into the MRI machine.

As you know, it’s a challenging process. ““Burr burr dirr dirr diit diit””… Millions of strange sounds. Sometimes you get hot flashes, sometimes it’s chilly, and you shiver. 

But when you have MS, you become friends with this MRI machine.

The diagnosis was confirmed based on the results, and I was urgently hospitalized. They needed to extract spinal fluid for further confirmation and to treat the MS attack with high-dose cortisone.

I shudder when I recall the lumbar puncture (LP), but believe me, I remember nothing! I know, I screamed. I also know I hurt John’s hand by squeezing it too hard, but that’s all.

Did the procedure hurt?

I don’t remember!

I later realized that the fear and stress I felt about LP were influenced by the movies and series I watched 🙂

The purpose of LP was to confirm the diagnosis further, checking for viruses, bacteria, etc. Fortunately, there were none.

Just plain MS.

After hospitalization and the LP, I was routinely given high-dose cortisone IVs early in the morning for ten days.

Besides that, I just lay there, wandering around the hospital. I had to stay calm, not overthink, entrust myself to the doctors, start meditating, pray, read books, and pamper myself with lots of care from my husband, mom, sister, and dad.

And I definitely ate salt-free food for these ten days. You wouldn’t believe how much weight I lost during that period. I’ll tell you about that later. 🙂

If I learned anything during this time, I married the most wonderful man in the world!

There’s probably a lot of praise for John on this site, and in this writing, don’t get bored; I love him, and he deserves to be spoiled, too, right? 🙂

I spent about 10 days in the hospital. When I got home, the numbness had either gone or decreased significantly – I forget how long it took. What bothered me more was the soreness in my neck from being held tightly by the nurse’s firm hands during the LP, but that also passed with time.

Later, in 2013, a different kind of numbness started. Of course, I delayed going to the doctor again…

But now, we Turkish people are a society that lives with “this is probably something else” thoughts. I had to wait at least a few weeks. After some “let’s wait and see,” we reluctantly returned to our doctor.

“I’m feeling numbness again (I don’t even remember where it was now), but it comes and goes; it’s not getting worse,” I said to my Neurologist.

“How long has it been numb?” asked the doctor, looking like she’d figured out her patient.

“I think we’ve just passed a week, maybe in the middle of the second week,” I replied shyly.

“And you waited this long to come? Actually, it’s good you did because if you came earlier, I would have immediately given you cortisone,” she said, a smile appearing on both our faces with John.

But this doesn’t mean you should delay going to your doctor. EVERYONE HAS DIFFERENT SYMPTOMS, REACTIONS, AND MS ATTACKS, which I would like to emphasize, write in capital letters, and even stress further.

My general MS attacks peak within a week or two and then slowly decline over a longer period. Yours could develop differently, so always stay in communication with your doctor and continuously share your process. 

My neurologist didn’t start me on MS medication right away while monitoring my progression. Then, the process brought us to 2015.

It was again after New Year’s, I think it was February, and I started feeling numbness in my face. When I looked in the mirror and raised my eyebrows as if surprised, one side wouldn’t move. It’s funny, but do you ever check if both nostrils open and close evenly? Even after the attack passed, I kept checking for a long time. One side of my face wouldn’t move in this MS attack.

This time, we went to the doctor immediately. Another MRI was taken, and cortisone was needed again. However, this time, I did not need to be hospitalized. I had to take cortisone via IV at the same time every day.

For about 5 days, a nurse came at the same time every evening and administered the IV. Removing the IV was always John’s job, even though he hates needles. (Who doesn’t :p) 

At my next doctor’s appointment, she said, “Either postpone having children or let me find you a doctor to speed up the process because we need to start at least 5-year medication treatment, and I’m getting worried.” And she asked us to make the big decision. The big question was:

“Do we want children?”

Don’t be fooled by how calmly I’m telling this now; digesting all this was quite hard.

When we got home that evening, I couldn’t stop crying (I can offer a bunch of valid reasons like being a woman, hormones going haywire, and difficult decisions, but I guess I don’t need an excuse 🙂 ) While I was struggling with this chaos inside me, hearing these words from John was incredibly comforting:

“Let’s postpone; nothing is more important than you. If we can’t have children for some reason after 5 years, so be it. Did we marry to have children? We married because we love each other. So, I say we postpone.”

I can’t describe the weight lifted off me at that moment. Like a knight out of a novel, he rescued me from that difficult decision.

I hope you also have someone in your life to go through this process or similar tough times with. Your spouse, mother, father, friends, cat, or dog. If not, please socialize a bit. I’m the most antisocial person, but even I managed to socialize a little.

That evening, we informed my doctor of our decision, “We’re postponing to have a child; let’s start the medication.”

The response we got to our message to the doctor was “the hospital we needed to go to, the prescription we had to get, and the names of the medications he thought we should start with.”

You expect some coddling and praise for making such a brave decision, but I realized over time that it wasn’t such a significant decision to dwell on. I was never excited about the idea of “I want a child.” John looked at the issue of children with the same ease as I did.

Then came the time to explain our decision to our families. That’s when I realized again how lucky I am. 

I hope you also have families as warm, embracing, tolerant, and calm as mine. They supported us 100% in our decision. There’s simple logic: if I’m going to be a mother, shouldn’t I and my body be well first? If they want a healthy grandchild, they have to prioritize my health.

Okay, it wasn’t straightforward, and the emotional side was quite heavy. Still, my family cared for my health and gave me all the coddling and praise I had expected from my doctor for making this tough decision.

Then it was time to queue up at the state hospital, get checked, and have my state hospital MS doctor and my private hospital neurologist agree on my medication treatment and write my prescription.

I won’t lie, the waiting lines were very, very long…

Hours that didn’t seem to pass…

It was there I realized that life isn’t all rosy. The despair, fatigue, and resignation of people like me, waiting in line, thinking, “I’m already sick; I might as well be lying in bed at home instead of waiting here…” Yet, despite everything, they behaved respectfully and tolerably towards each other.

Similarly, the nurses were running back and forth, putting patients in line, the assistant doctors doing the preliminary checks… Everyone seemed like a bomb ready to explode from exhaustion. Still, surprisingly, they all tried to remain calm toward each other.

Even though it required going back and forth for a few days and undergoing numerous MRIs, this process, too, came to an end, and both of my doctors agreed on the same point. (The point: Yes, I had MS)

I said to the doctor who was going to write the prescription;

“I’m thinking of starting with this XYZ medication that my other doctor mentioned,” – I’m about to say something funny – I chose it because its name sounded more friendly.

“Okay, I’ll be requiring regular blood tests anyway. We’ll monitor the enzymes in your liver and change the medication if necessary,” He said.

I thought, ‘Alright then, nothing will happen to me.’ 

And it turned out these medications were injections. 

A warm sensation trickled down my head. My heart beat to its rhythm. But then I calmed down, thinking, “Let’s see, there must be an easy way.” 

I was becoming a relaxed person, just like John.

The nurses gave us the number of another nurse who represented this medication. She then connected us with a nurse in charge of our area. After that, I went home with my needles, and the nurse visited the next day.

They call it “orientation”, right? The first introduction to the medication, then the needle, and bonding with it, followed by the administration of the first injection. John and I sat side by side, listening to our nurse. Then, it was time to do the injection.

We put the syringe into a device, pressed its needle-end against our skin, pressed the button, and with a ‘pat’ sound, the needle touched the skin, simultaneously injecting the medication.

I wouldn’t believe it, but I did exactly what the nurse showed. My hand didn’t even tremble. I took a deep breath and pressed the button. The nurse was even surprised. She shared a story, “I once went to do the same orientation with a CEO. When it came to doing the injection, it took almost an hour to encourage him.”

After this rightful praise, the injection site became red, and later, I would learn that it sometimes turned purple (because my skin is as pale as paper), but thankfully, all of this was normal. The nurse said, “If your arm gets too red or purple, especially in the summer, we won’t inject there; we’ll use other areas.”

So, I started doing injections three times a week. Yes, it sometimes turned purple and always reddened, but I was satisfied. 

Yes, I was sick, but I was undergoing treatment.

Soon after, I started feeling down. I began wandering around in a depressive state. I like to analyze myself, frequently asking, ‘What’s wrong with me? Why am I this low? I don’t want to be this low…’

I couldn’t find an answer. 

When the nurse came the next time to check me out, I told her about my situation, and she reminded me of the telephone psychologist support provided by the medication. She had mentioned it on the first day, but I hadn’t paid much attention, although John remembered. For this reason, it is beneficial to be in this kind of meetings with your loved one by your side.

I started talking and venting to my psychologist over the phone every week. Then, it was time to check my liver enzymes. They were very high.

I’m elaborating on this part because it feels important. If you’re diagnosed with an illness for the first time and starting medication, you need to know it’s essential to remain calm.

My MS doctor said after checking my liver enzymes, “Let’s stop the medication and check again after two weeks.” So, we started monitoring how my body adapted to the medication. I would go to the health center and get my tests done, keeping my MS doctor informed.

I kept talking to my psychologist during the breaks and restarts of the medication. Eventually, I felt somewhat relieved when she said, “These psychological fluctuations might be caused by your medication.”

I think, “OMG Sis! I wish you had told me from the start so I wouldn’t have blamed myself!” Knowing this was reassuring.

So, what’s the outcome? My liver didn’t accept this medication. No matter the treatments or detoxes I tried, it didn’t work. Looking back, I’m glad it didn’t. 

In July 2015, I started a new medication. This daily injection didn’t cause bruising but did cause some redness, which faded after a while. The next day, it would itch sweetly 🙂 And there were even many funny visuals related to this medication.

Most importantly, it didn’t affect my psychology. Maybe the other medication had different side effects on everyone.

There’s no rule saying the side effects I experienced will happen to you, too. If you’ve just been diagnosed, you might feel fragile and hurt, asking yourself, “Why me?” Stay calm. You’ll live with it, and after a while, you’ll even forget about it.

The most important thing to remember should be, “I shared the situation I am experiencing now with my doctor; it’s not a big deal.”

Yes, attacks come suddenly and can be scary, but they don’t come out of nowhere.

You’ll hear phrases like, “Walk it off; it’s just a muscle cramp,” from your loved ones.

But over time, they’ll understand and support you.

If you’re researching MS, always check how it makes you feel. If it stresses you out, you might choose to stop researching for a while. Observe the intention of the writer. Some write alluring articles just to get clicks. But these can be upsetting and misleading. Try not to fall for such traps.

The easiest way to keep calm after getting diagnosed is to leave the research to someone you trust. Or, ask your doctor and accept whatever they say. 

This is my story; yours is unique to you. If you can keep it separate and AVOID OBSESSING, then by all means, continue to research.

I knew myself, so I didn’t do any research at the beginning. John took over all the research. If there’s a calm person around you, tell them to research for you.

Because, really, “it’s not a big deal.”

You’ll continue your daily life even if there’s an attack.

Take care of yourself.

Most importantly, eat well, get your vitamins, and don’t catch a cold.

Do your exercise, walking, yoga, dancing, etc.

Spend more time with what you love, as long as it doesn’t harm you.

In short, it’s not a big deal, but I have MS.

I just need to pamper myself more.

Be more careful with what I wear and eat,

Take better care of myself,

Practice yoga and meditation (it really helps)…

See you in my next article 🙂 

PS: All the drawings above were made by ChatGPT and Dall-e. Check my store for products made with them 🙂