Personal Story

Åsa Molin

I had many other neurological symptoms such as lack of balance and position perception, heart palpitations, brain fog, tremors in hands and legs, L’Hermitte’s sign/electric shocks through the body, MS-hug, fatigue, migraines, blurred vision, bruising, difficulty speaking due to tongue and palate tremors/fasciculations – I had to put a chewed gum under my tongue to stabilise it – and was in pain 24 hours a day and these were only part of my symptoms.

In October 2018 I collapsed and was admitted to the hospital for 5 days, when I read my journals afterwards I could see that the doctors thought I either had MS, Lyme disease, inflammation of the spinal cord/ Guillain-Barré syndrome .

On a full-body scan they found white matter changes in the brain and a long lesion/gliosis in the spine but they had no idea what it could be. The lesions were the wrong length and in the wrong place to be MS so they guessed – and yes, with a question mark behind – that it was a post-traumatic gliosis from a traffic accident in 1987 or after a minor collision in 2004, even if previous MRIs over the years did not show anything.

After 5 days at the hospital and two MRIs, I was discharged without a diagnosis, except for the post-traumatic gliosis. I thought I was going to die from some neurological disease that they not had found yet because I was in such a bad condition with lost muscle mass, tremors in the whole body that were visible, difficulty walking, difficulty remembering anything, difficulty speaking and remembering words. I stuttered, lost my voice occasionally, froze and was out of breath, in addition to all the original symptoms i mentioned before. All I wanted was to sleep, hoping to wake up one morning without symptoms.

The neurologist I saw in November 2018 had not been informed about me coming so instead of one hour I got 25 minutes. Not surprisingly, he had not read my journals and gave my MRI images only a quick glance. No need for surgery, he noted somewhat casually! After a quick examination, he diagnosed me with enhanced physiological tremor and essential tremor but thankfully enough ruled out ALS, as my clearly visible tremor in the tongue and palate was not ALS-typical. What it was though, he had no clue.

In January 2019, I was referred to an orthopaedist due to symptoms and MRI changes and the first thing he said was: “Åsa, what you see in the spinal cord is not a post-traumatic gliosis, I don’t know what it is, but I’m sure this lays behind a number of your symptoms.”

In December 2018, I had dropped the oral B12 track of 2 to 4 high dose tablets a day after my symptoms worsened. After this meeting I started thinking about B12 deficiency again as no doctor had any explanation. I had ruled out Enhanced physiological tremor and Essential tremor myself when it didn’t match my symptoms.

In March 2019 after reading everything I could find about B12 deficiency and also reading in B12-groups and on websites, I asked my current GP about B12 treatment with injections. Even though my B12 levels were now above the reference interval I got 5 start-up B12 injections every other day due to the very visible tremor in the tongue and palate which my GP never had seen in any patient before. She didn´t know what else she could do but emailed ‘my’ neurologist about this and got the answer that he didn’t know what was causing it either, but that she should get back to him if ‘the patient’ started drooling…..

I got a little better after the injections and the tremor/fasciculations in the tongue and palate stopped for a period which was a great relief! But the symptoms came back, and even worse than before, even though I now continued to take 4-6 mg B12 tablets/day. That was incredibly scary.

In July 2019 I called my new Health Center to make an appointment and cried on the phone because I was so bad. This time I was lucky enough to see a German doctor who worked there temporarily and he listened to me when I told him about all my symptoms and that they had ceased with B12 injections. I also brought up the British guidelines for B12/folate deficiency and asked if I could follow the guidelines – including the BNF – to see if the symptoms improved/stopped and he said:”OK, let’s try B12 injection every other day and folic acid as long as I am your GP and as long as you need“, it was a huge relief to finally be heard and get help to see if it was a B12 deficiency that was behind it!

I had big problems with wake-up symptoms at the beginning of the treatment especially with increased neuropathies, tremor, balance problems but I had read about this phenomenon and knew that it can happen. I knew I just had to carry on and get through this, my symptom diary was a big help to follow my symptoms/improvements.

Back to where I started my story, it took me 6 months to canter my horse without my polyneuropathy flaring up. It took a little longer, about 8-9 months, until I had more good days than bad. It is really not a quick fix if you have had a B12 deficiency/symptoms for a long time.

In August 2021 I had a new MRI of the spinal cord which showed that the lesion/gliosis on my spine was gone, a complete remission!

The doctors’ guess that it was a post-traumatic gliosis was in fact a Subacute Combined Degeneration of the Spinal Cord (SACD) due to B12 deficiency/lack of absorption of B12 which can be reversed with the right treatment.

The reason for my lack of uptake of B12 is still unknown. I have had a gastroscopy showing no atrophy and no bacteria.
Looking back, I can see I have had B12 deficiency symptoms since I was a little baby. After reading through my journals I can’t see any B12 tests ever been taken until 2018. I have read that about 15% of the B12 deficiency patients do not know and will never know the cause of their deficiency. One reason is that the complex uptake of vitamin B12 is not even fully known today, but regardless the cause, the treatment is the same, it must be symptom-led, based on each patient’s needs.

So to all of you I’d like to say: “don’t give up and read, read and read about B12 deficiency/ PA in trustworthy sources such as PAS, so you can have a good discussion with your doctor about haematological tests, other investigations and also about the right treatment for you, which should bea symptom-based one, as it can differ between people regarding form, dose, interval.”
To conclude, I understood already in the beginning of 2019 the importance to be well-read about B12/PA because of the lack of knowledge among medical professionals and I therefore started a Swedish fact-/science-based B12 group in September 2019, cheered on by admins in B12 groups in other countries.

I still run the group and still read lots of articles and scientific reports about PA/B12/folate deficiency, several hundreds until today, all saved on my PC. I translate all information I post in the group to Swedish so everyone will be able to read and understand. The group has 4800 members today.

As the B12-geek I have become, I also, as the only Swede, attended the International B12-conference about B12 deficiency in clinical practice in Rotterdam on the 8th and 9th of June 2023, a great arrangement by the B12 Institute and Clara Plattel! It gave so much and I really hope that at the next conference, planned for 2025, more Swedes will attend, also from the medical profession, so that Sweden’s well-known B12 treatment can start to change. Instead of oral B12 fits every patient, to treat individuals based on what works best for that person regarding treatment and frequency.

At the moment, in Sweden oral B12 supplements are prescribed to all patients, also to those with malabsorption and neurological symptoms, even if SACD is present. There is also a belief that injections have a placebo effect. If any patient gets injections with a shorter interval than 1 to 3 months, they have to be spaced out and be replaced with oral tablets. If (read when) the symptoms then come back or worsen, it becomes the proof of the placebo effect because the serum value is high. Most of you will understand that being a B12 deficiency or PA-patient in Sweden is very hard. Knowing that my B12 group has made a difference for a number of the group members who have been diagnosed or received the right treatment through the information in the group gives me the energy to continue to read and learn in order to contribute to increasing the knowledge about B12 deficiency and Pernicious Anaemia in Sweden.

So never ever give up!