MS: pretending to be healthy

In 2010, I now know for sure I had my first serious MS ‘schub’ / attack of MS.

After a visit to the dentist, I actually thought she hit a nerve cleaning my teeth because after that I had a numb feeling on my right cheek. But the feeling lasted quite long. So long my (now ex) partner wanted me to see my GP because he thought I might have had a stroke.

I didn’t think much of it, but to reassure him I went to the GP. The GP first send me to an oral surgeon, but after an x-ray on which nothing was visible, he said: just to be sure I want you to see a neurologist.
I was: what, but it is already becoming less numb (after 3 weeks), but he insisted.

Ok, I will go I said, but still didn’t think something was really wrong.

A week later I was at the neurologist. He ran some tests, but couldn’t really find anything also and he said he would schedule an MRI.

Again I was very surprised. Why this is costing a lot of money and I feel fine. Just a little bit numb. But he told me he wanted to exclude some things (although he didn’t say what).

I went to get the results of the MRI by myself because I didn’t really think something would come out, after all the numb feeling was gone by then and I felt fine again.

But boy, there I was wrong!

When I sat down the neurologist said: I have bad news, you might have MS.

I was completely blown away and didn’t hear much of the rest he was saying.

After a few minutes, I came back to the conversation and he said that to be sure, he wanted me to have a lumbar puncture and another MRI in 6 months.

The puncture didn’t show a massive deviation, just slightly, so that was not really helping also.
The big surprise came 6 months later when the second MRI showed nothing anymore. Then the simple conclusion was: ok, you don’t have MS.

I must say, after six months of living in hope and fear, I was very much relieved. Also a bit angry though because of the uncertainty and because I didn’t understand why the neurologist told me I might have MS without knowing for sure. But now I know some patients would like to know and others, like me, only want to know when it is certain.

Life went on for 8 years without anything happening, just sometimes a bit unsteady or tingling, numb feeling in my hands but that went away quite fast so I didn’t think of it anymore.

Then it happened again:
July 2018: a numb feeling, starting in my right foot. At first, I thought my fitness shoe was too tight for dancing but after 4 days my total lower body felt numb and when walking it was like I was walking on needles. A really uncomfortable and in de evening painful feeling.

Although I didn’t lose my strength (still could walk, went to work and did my workouts) I somehow knew it was MS.

I didn’t inform anybody in my circle because I didn’t want them to get worried over maybe nothing, because of the first time.

I went to the GP. Due to the holiday season, my own GP was on holiday so I had to see someone else. I told her my thoughts and asked for an MRI scan. She said MS is really difficult to diagnose and that it probably was just a muscle that was causing the feeling and that I shouldn’t worry and advised me to go to a physical therapist and didn’t want to refer me to a neurologist at first.

But I insisted there was really something wrong and after a while, she gave in and I went to a neurologist.

He also thought I was worrying over nothing but said I would get an MRI of my lower back. I told him there was nothing wrong in my lower back and that I would like an MRI of my neck and head. But he wanted me to have an MRI of my lower back. As expected nothing came out there, but still, the numbness was there. It was not as much as the first 4 weeks, but still, I felt it. Then he said: ok, to reassure you, we will do another MRI of the head.

Within 2 weeks the MRI and result appointment was scheduled.

The result was as I had thought from the beginning: MS.

He apologised but told me he thought it was a muscle because I didn’t lose strength and that is typical for MS. He said he would transfer my file to a neurologist, who specialised in MS.

After that lots of other tests followed, but in the meantime, I was also dealing with another health issue.
Within a few weeks I was diagnosed with MS and I heard there were other bad (cancer) cells found in the cervix.

At that point, I was a bit devastated. I had not informed anyone in my circle about anything yet because I didn’t want to worry anyone not knowing for sure if something was really wrong. And now I had to tell about two bad diagnoses.

The neurologist and gynaecologist both told me I should inform people because this was to much to deal with alone.

But I really didn’t know how. As a single mom, I mainly wanted to protect my kids and not worry them for nothing (in case nothing came out), but I knew now I had to tell them.

It still took me a few days. I needed to digest it all myself first and how I would deal with this.

I decided to first deal with the cervix cancer cells and the operation and then MS.

After telling my kids and some friends ( still not much) I got the surgery on the cervix first.

In the meantime, I read more about MS and realised how many forms there are.

When the cervix was ‘clean’ again I focussed more on the MS.

It still took me 2 years before I was really open about the fact I have MS.

This is mainly because the few that I told couldn’t all deal with it and I got some really nasty remarks ( as most of you probably can relate to). I lost some ‘friends’ also.

But after two years of reading, learning more about the disease and how to listen to my body even more, and adjusting my diet and lifestyle, I was ready to get it out there.

I decided to run 100K for TheMay50K to raise money for MS Research and to show everyone that, despite a diagnose, we are still able to do a lot. It is not fair the way we are treated sometimes.

But I also know now that this is because there is so much unknown, ignorance and misunderstanding about MS.

Due to the fact we all have different symptoms, no 2 MS patients are alike. And this is difficult to understand. And if it was difficult for me to understand in the beginning, then of course it is also difficult for others.

That is why I want to create awareness for the disease. I think this is necessary. People tend to think that all MS- patients are in a wheelchair or show signs of the disease, but this is not the case. I can have symptoms without anyone realizing or seeing it.

And I would like to help to make people and companies understand that MS- patients are not always showing they are ill, but we need to take more care of ourselves to stay ‘healthy’ or feel good.

I know my diet, exercising, and enough sleep help me a lot. But I also learned that when eating too much sugar, not sleeping enough and too much stress can cause a relapse. But this is for me. Also, this can differ very much and is not for all MS- patients.

So I focus on this being on point because this is helping me. With these adjustments and paying attention, I am feeling good.

Although I can’t control everything and I know it can turn easily ( I had a relapse a few weeks ago due to a huge amount of stress and therefore lack of sleep) I do my best to listen to my body carefully because it is giving me signs when I need to pay more attention.

We have a life sentence already for now and we don’t need society to treat us wrongly on top of that.
I hope we can say goodbye MS at one point, but until then I will do my best to help to create awareness as much as I can for this disease to help people understand.

My neurologist is great, also a believer that a healthy lifestyle can contribute to feeling better ( he even developed an app for MS patients to help them with diet etc.) and I am in research of the University of Humanity in the Netherlands. They follow different MS patients for 2 years to see how they are supported in the doctors’ room at an appointment. This is because we don’t only have to deal with this incredible insecure sometimes erratic disease, but also have to learn a lot of medical terms. The research is about the ‘human and emotional aspect at the neurologist, but also in daily life.

I am happy that I can support this research and even more grateful that this is done and that we are ‘seen’ as not only patients but as human beings that got an awful diagnoses they try to deal with.

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