All is well

All is going well and working hard to keep it that way!

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Follow-up MRI

The last few weeks have been stressful because it was time for a follow-up MRI. No longer having Dutch health insurance, I decided to have the follow-up scan made here in Manila.

The scan was made on the 5th of December. It was scheduled at 9 pm, I was finally done at 11.30 pm. I brought my previous scans from the VUMC, and translated last year’s radiology report.

On Tuesday morning, the results showed up in my online portal. With a pounding heart, I read the report.

I am very happy to say that the report was all fine. No sign of MS-activity and no sign of tumor recurrence.

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Follow-up blood test

My thyroid issue seems to have resolved by itself. The latest follow-up blood results are all within the normal range. The next follow-up will be in March 2020 to make sure that I didn’t develop hypothyroidism.

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Autoimmune​ thyroid disorder

SPECT scan
Uptake scan

I had a lot of different tests done. The first blood test showed that my thyroid is hyperactive. Further blood tests showed that I have thyroperoxidase (TPO) antibodies.

TPO is an enzyme involved in thyroid hormone synthesis, catalyzing the oxidation of iodide. Anti-TPO antibodies activate complement and are thought to be significantly involved in thyroid dysfunction and the pathogenesis of hypothyroidism.

They also did a Thyroid-Stimulating Immunoglobulin (TSI) test.

The TSI test measures the level of thyroid-stimulating immunoglobulin (TSI) in your blood. They measured high levels of TSI in the blood, which could indicate the presence of Graves’ disease, an autoimmune disorder that causes hyperthyroidism.

The final test was called Thyroid Scintigraphy & Uptake. I had to drink a solution with radioactive iodine (I-131), after two hours the uptake was measured. Twenty-four hours later the uptake was measured again, and a SPECT scan was made of my thyroid gland (see picture). The test showed a low uptake and an enlargement of the thyroid (right lobe more than left), and some possible nodules (places with no uptake) in the gland.

The endocrinologist told me that I am currently having thyroiditis (a painless inflammation of the gland, and that I have two autoimmune reactions, one that could cause hyperthyroidism and one that could cause hypothyroidism. The current blood values show hyperthyroidism, but according to her, a shift to hypothyroidism is to be expected.

The plan of action is to wait for 4-6 weeks, then have new blood tests done to show thyroid functioning (the antibodies remain, so no need to test them again). Also then an ultrasound will be made of my thyroid to check if the nodules resolved (they could be caused by the thyroiditis), or if they are caused by something else.

Based on these results a treatment plan will be made. In the meantime I have to wait. Luckily I am feeling slightly better.

Thyroid dysfunction is very common after treatment of MS patients with Lemtrada (a treatment for MS, and a form of chemotherapy). My treatment was not the same, but similar. Maybe it is related. The linked article reads: “Silent thyroiditis, the third classical AITD phenotype, is characterized by a self-limiting painless subacute lymphocytic thyroiditis, lasting for weeks to months. TPOAbs are often increased. In the first phase, increased thyroid hormone levels can be observed due to leakage caused by thyroid inflammation, whereas transient hypothyroidism can develop in the second phase. Eventually, thyroid function is restored.”

Let’s hope that that last statement is applicable.

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Gotta Catch ‘Em All

We moved to the Philippines three months ago. Things have been going well. It took some time, but we finally moved into our apartment last month. The kids have started school, and we have settled into our new life.
But since a week or two, I have been feeling exhausted and most of my old MS symptoms have returned (as they do when I am tired). So much so, that I felt like this was not ‘normal.’
I went to a hematologist here, which was a new experience. No appointment just on a ‘walk-in’ basis, waiting in a waiting room with a huge TV showing some loud Filipino soap-opera until it was my turn and paying in cash to the secretary afterward.
She ordered a blood test, which I had this morning. Generally, my blood cell counts were low but climbing, from when they were measured last in December.
What was not in order was my thyroid function. Hyperthyroidism can be a result of the HSCT treatment I had (Graves’ disease).
More tests will follow with the endocrinologist next week. Until then, I have started on a low dose of Thiamazole.
Thyroid disease is still a lot better than either recurring lymphoma or MS. Nonetheless, as much as I like Pokémon, my intention with diseases is not to “catch ’em all”.

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Closing my ‘Activity Rings’

I attended a research meeting in October last year. The MS researchers there mentioned that in scientific literature and in their tests it had been shown that being active is not only beneficial for your physical fitness, but it also contributes a lot to your cognitive performance.
Since that meeting, I have been closing the ‘activity rings’ on my Apple watch every single day. I was on a 120-day streak of closing my rings. Even on days that I didn’t feel great, I pushed myself to close all the rings. It became kind of an addiction.
Last Sunday and Monday I felt awful. I guess Thomas coughed on me one too many times. I had to stay in bed for most of Sunday. Even though I have been doing great lately, I couldn’t help but think “Do I feel dizzy? Is my headache the same as in 2017? Did my tumor come back, or is my MS active again?”. I have been feeling a lot better again lately, and I have been able to continue closing my ‘rings’, but I guess that the ‘fear of getting seriously ill’ will rear its head every time that I feel bad. Luckily up to now, that does not happen very often.

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Stichting MS in beeld

Now that I am feeling better, I am spending a lot of time with my newly founded “Stichting MS in beeld”. This foundation was recently recognized by the Dutch tax authority as an ANBI (Public Benefit Organisation).
The main goal of the foundation is to help people with MS by communicating scientific insights in an accessible, but in-depth manner.
I love doing this and it suits me extremely well as both a scientist and a patient.

Please visit the foundation’s website, (you can switch the language by clicking the flags in the menubar).

Even though the work that I am doing for the foundation is completely voluntary and unpaid, the foundation does have expenses. If you would like to support the foundation, consider making a donation.

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My last antiviral pill

Today I took my last Valacyclovir tablet. Due to the harsh chemo my immune system was suppressed for a long period of time. Now more than a year later, I could finally stop with these antiviral pills. I am free from medication now.

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MRI scan clean

A new check-up MRI scan was made on the 13th of November. My neurologist would call me with the results on the evening of the 21st. I was looking up to the eight days of uncertainty and stress. But already on the morning of the 14th, I received an automated email from the electronic patient dossier at the VUmc, that a new result had been uploaded (these messages are automated and linked to the internal hospital system, every patient that registers for “Mijn Dossier” receives them).
I wasn’t sure whether I would want to look into the file, it would only be the radiologist’s report, so if there were anything abnormal in there, I would have to wait until the 21st to discuss it with my neurologist.
With a pounding heart in my chest, I opened the website and read the report. It was a lengthy radiology report in medical jargon. It took a few moments until I was sure that it read, “no sign of lymphoma, no new MS activity. Images are consistent with complete remission.”
You can imagine that it was a big relief. Later that day my neurologist confirmed the report when I emailed her about this.
The next scan will be in a year, assuming nothing clinically happens before then.

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One year ago

Yesterday I was browsing through my blog. It feels unreal to read about what happened a year ago. Around this time last year, I was in the hospital recovering from the final course of chemotherapy.
I remember feeling weak and sick, Thomas’ Halloween ghost dangling on my IV-stand, while I pushed myself to walk around the ward.
How things have changed.
Nowadays, I get up early in the morning from Monday through Thursday to get the kids ready for school, have them eat their breakfast, help brush their teeth, force them to hurry up and wear their shoes, their jacket, and walk with them to school. On Fridays, I get up even earlier to go to the VUmc in Amsterdam, not as a patient, but as a member of a research group that is researching multiple sclerosis.
For each of the last 40 days, I have been closing the activity rings on my Apple watch. Standing for at least 2 minutes per hour for 12 hours every day, moving for 400 calories, and completing 30 minutes of exercise. In practice, that means that I am on our rower each day, except for Mondays and Thursdays on which I am exercising at the physiotherapy.
I have started making informative YouTube videos about the HSCT treatment for MS patients, a complicated and challenging topic. Finding out facts about this treatment, reading scientific literature, talking to experts, compiling understandable information and recording and editing videos. I enjoy the process which has taken up hundreds of hours already.
Next month, on the 18th of November, I will be speaking at the National MS day, organized by the Dutch MS Foundation about this topic.
Last month I erected a foundation called “MS in beeld.” I created this foundation to make unbiased, scientific, and understandable information available to multiple sclerosis patients and others that are interested. As soon as the website of the foundation is online, I will mention it here.
On top of this, I enjoy playing Pokemon Go with the kids in my cargo bike. My avatar is called ‘bakfietspapa’ (meaning ‘cargo bike dad’), and we have become quite a phenomenon in the Pokemon Go community here in Den Bosch. People have started calling out “Hey bakfietspapa!” when they see me biking around.

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