5.5 years until my Multiple Sclerosis diagnosis

I’ve been thinking: How can I tell the story of my MS diagnosis as briefly as possible? The problem is, there is no “as briefly as possible” here. It simply took 5.5 years from the first symptom that actually limited me to my diagnosis. I deliberately say “limiting symptom” because once you know what you have, you may suddenly realize just how long you’ve actually had it.

I’ll try to stick to the key points that matter to the story.

My path to diagnosis began in early 2017.

I had always liked reading in bed before going to sleep. And that’s what I was doing the first time I felt this strange sensation on the right side of my face, next to my ear.
At first, you don’t think much of something like that.
Maybe I’d pinched a blood vessel or a nerve while propping up my head, and now it was complaining.

That day, the sensation went away again. Returned to normal.
But it started happening more and more often.

The strange sensation first turned into a “fluttering,” then a “burning,” and later into electric shocks that traveled into my shoulder, neck, and thoracic spine.

In April, I traveled alone with our two younger children to a vacation home in the Netherlands.
I enjoyed being away with just the two of them. But it was exhausting, too. The electric shocks became more frequent and more intense, rarely giving me a moment to catch my breath. I just hoped the whole thing would settle down a little and that I could get the kids home safely.

That’s how I’ve always been.
If I had a goal, I could pull myself together pretty well.
From the outside, people often couldn’t tell how I was really doing.
I usually only realized later how much strength it had taken out of me.

Back in Switzerland, I went to see a primary care doctor. There had to be an explanation for this, right? Blood tests showed an iron deficiency and a vitamin D deficiency. I was given iron supplements and vitamin D drops.

The doctor also examined my cervical spine, manually released some blockages, and then treated my neck with a vibrating device. He himself called it his “magic wand.”
The treatment did not agree with me at all. I could barely drive home.
Before the “magic wand” treatment, I had only experienced electric shocks along the upper two branches of the facial nerve. Afterward, they occurred all over the right side of my face. Even along my jaw. It was simply painful. I didn’t want to move at all. At the same time, I thought, “Well, maybe you’re just not moving enough.”

Today, of course, I know why that treatment made everything so much worse.
Vibrations are my ultimate enemy. They simply make everything worse.

A few days later, I had another appointment. I categorically refused another treatment with the “magic wand.” The doctor was not pleased. He had diagnosed “trigeminal neuralgia” and was convinced that I would never get rid of it without his “magic wand treatment.” He couldn’t change my mind.

After that experience, I’d had enough of doctors for a while.

In June, we took a trip to Zermatt. The electric shocks remained. Whenever I walked, the same pattern repeated itself: A few steps. Stop. Wait. Keep walking. Stop again. I didn’t tolerate the gondola ride well either.

Over time, I noticed that certain cars made my symptoms significantly worse.
The car I had at the time was one of them, and a replacement car also made my symptoms worse. So we sold the car and replaced it.

Today, it’s clear that those vehicles simply produced vibrations that my MS does not cope well with.

Back then, we were simply looking for solutions to a problem whose name we didn’t even know yet.

I went to a second primary care doctor and showed him my previous blood test results. He didn’t really examine me. He adopted the first doctor’s explanation: iron deficiency.

Later, I developed severe stabbing pain in my right ear. It felt as if someone were driving a large carving knife into my ear. The diagnosis was “swimmer’s ear,” even though I hadn’t been swimming in a very long time.

I was referred to a neurologist.

Before the appointment, I had done some research myself. Research had once been part of my professional life. If I had had to diagnose myself back then, my diagnosis would have been “multiple sclerosis.” The neurologist, however, had only been given the job by my primary care doctor of ruling out “trigeminal neuralgia.” She did that. She did not order any further tests.

She told me that the neurological things I couldn’t do, such as walking on my toes, would start working again if I practiced them. She gave me a referral for physical therapy.

At the time, I thought: “The neurologist probably would have said something if she suspected multiple sclerosis and would have ordered further tests.” So I put the thought aside again and was glad not to have an incurable autoimmune disease.

I went to physical therapy feeling optimistic. Just muscle tension. Fix that and everything will get better.
But the therapy didn’t improve anything. Sometimes something the therapist did would help, and the next time, the exact same thing that had helped a few days earlier would make everything worse again.

The therapist couldn’t explain it and made me feel like a hypochondriac.

After two prescriptions, the treatment was stopped. She literally told me, “Your body now has everything it needs to heal itself.”

I believed her.
So I kept going.
I tried harder.
I tried to ignore the symptoms.
I thought that if I just tried hard enough, things would get better.

For me, 2018 began with the hope that maybe my body would somehow recover after all. I believed I simply had to try harder. After all, according to the physical therapist, my body had everything it needed to get better soon, right?

Maybe that was even true. I don’t remember anymore.
What I do know for sure is that my car had to go into the shop in early 2018, and the replacement vehicle made everything much, much worse.

So I went back to the primary care doctor. This time, he sent me to a spine specialist.

The specialist took a quick look at me and diagnosed hypermobility.
He then explained what hypermobility meant. His explanation made perfect sense to me. I had to agree with him. I am hypermobile.

He sent me for acupuncture and to another physical therapist.

Acupuncture is certainly exactly the right thing for many people. For my body, however, it wasn’t.
I didn’t feel well after the treatments. I felt as though my entire body was resisting them.
So I decided not to continue down that path.

Instead, I went to physical therapy every week.
At first, we did conventional physical therapy.
Later, various additional treatment methods were added. Among them were TENS, semi-permanent acupuncture needles, and grid tape.

With every new thing we tried, I hoped that maybe this particular treatment would finally make the crucial difference.
But it didn’t.
The more we tried, the worse I felt.
Eventually, I pulled the plug.
Not on physical therapy.
On the experiments.

From then on, we stuck to conventional physical therapy.

2019 began much like the year before.

The symptoms were still there.
I still had no explanation.

During the year, I had to undergo an examination by a medical examiner for my health insurance company. The question was whether they would continue to cover my physical therapy.

I still remember one question the doctor asked me.
“What would you like to achieve with physical therapy?”
My answer came immediately.
“I just want to function again.”

That was all I wanted. I wasn’t expecting miracles.

Physical therapy was approved through the end of 2019.

From then on, things started to improve a little. Toward the end of the year, I noticed that I was feeling better. I wasn’t symptom-free. But for the first time in a very long time, I felt as though I was on the right track.

I still remember thinking that 2020 was going to be my year.
Instead of looking for a job, I had bought myself a sewing machine and, on my “better days,” I sewed bags and little pouches that I sold at markets.
Then, suddenly, there were no more markets in 2020.
We stayed home. Kurt and the kids were kind enough to help me move my sewing studio into a larger room.

We bought an industrial sewing machine.
As far as sewing was concerned, that was one of the best decisions we ever made. I didn’t know that at the time either.
It is considerably heavier and more stable than a regular household sewing machine. Its solid metal housing means it vibrates much less. It is also permanently mounted in a heavy sewing table and stays firmly in place while I work.
I could work well with it.

In 2021, an embroidery machine moved into my studio.
At first, I was really excited about it.

But it quickly became clear that this was not my machine. Even after a short time using the embroidery machine, I felt so much worse. I felt unwell. Drained, exhausted, and the dull pain in my body reached a level that was almost unbearable.

So “almost unbearable” that in early 2022, I went to see a primary care doctor again.

The new doctor took her time, listened to me, and prescribed physical therapy again.

I went back to the same physical therapist I had seen in 2018 and 2019. At the first appointment, she suggested using a massage gun.
I was skeptical at first. I had already made the connection between vibrations and my symptoms getting worse, even though I didn’t know why.
So I told her, “Vibrations really aren’t my thing.”
She explained that many of her patients benefited from it.
Eventually, I let her convince me.

About twenty minutes later, I left the practice.
I felt awful — absolutely miserable.
My vision was blurry.
My arms were tingling.
One hand felt as though it wasn’t really obeying me anymore.
There were other symptoms as well, but I no longer remember them in detail today.

I emailed the therapist. I needed to tell her what the massage gun had done to me, and I wanted to make sure there was something in writing somewhere stating that the thing was never to come anywhere near my body again.

I wasn’t expecting a reply.

But she wrote back. Her email contained one sentence that I couldn’t get out of my head.
“To me, it sounds as though you have inflammation somewhere.”

Thoughts started racing through my mind… Inflammation? Multiple sclerosis? Inflammation somewhere in my brain?

I had actually dismissed that thought years earlier. Still, I started researching again.
Not generally.
Specifically about multiple sclerosis.
I wanted to know which symptoms could occur with MS and how many of them applied to me.
With every page I read, I recognized more of myself.
Eventually, I wrote down all the symptoms I recognized in myself.
Before taking the list to my primary care doctor, I sent it to Kurt via WhatsApp.
I added just one sentence: “Do you see me in this?”
I wanted to make sure I wasn’t imagining things.
His answer was short. “Yes.”

I went back to my primary care doctor with my list of symptoms.
She looked at everything carefully.
She explained that every individual symptom could also have other causes.

She suspected a herniated disc and therefore wanted to order an MRI of my spine.

I strongly asked her to order an MRI of my head as well.
Eventually, she agreed.

The first MRI was the one of my head.

She called me later that same day. One sentence she said is something I’m sure I’ll never forget either.
“Well, I’m sure you’re glad you weren’t imagining it.”

Shortly afterward, I had my first appointment at the neuroimmunology clinic.
There, the MRI images were discussed with me in detail.
The senior physician explained every abnormal area to me.
His suspicion was clear.
There was a lot pointing toward multiple sclerosis.

Further tests followed to confirm it.
An MRI of my spinal cord. Evoked potentials. A lumbar puncture.

Once all the results were available, the final consultation took place.

The diagnosis was: multiple sclerosis.

I was told that multiple sclerosis had caused significant damage in some areas of my brain, spinal cord, and optic nerves.

At the same time, they recommended treatment from the highest-efficacy category.

These stories are based on my own experiences. They are not a substitute for medical advice. If you experience similar symptoms, please consult a medical professional.
The featured image for this article was created using AI.