Thread by @eddyhorse1

On April 5, 2022, I lost my words

It started with a feeling of numbness spreading down my left side, quickly growing prickly and painful. I felt very sleepy, like I was shifting out of consciousness.

The next day I felt some numbness and weakness in my face, and a growing headache. By that night, my speech was becoming slower, slurred.

At the hospital, my CT scan came back clear. I was treated for migraines and sent home. But it didn’t get better. I started having seizures and fits.

In desperation I took 600mg ibuprofen. Within the hour, I was feeling fine. The relief was profound. But it didn’t last.

Then I got a call from my doctor. My bloodwork had come back positive for Japanese Encephalitis Virus, and I was told to go back to hospital immediately.

I was taken into a back room of the hospital, a makeshift ward, with grey breeze block walls. There was only one other patient.

The neurologist pulled some instruments out of her bag, started tapping my knees and testing my reflexes. She pressed her bag hard onto my lap. I told her to stop. It’s not JEV, she said. You would be in a coma.

I was transferred to another ward, and seen by a different neurologist. Ibuprofen doesn’t treat neurological symptoms, she said, it’s impossible. What about headaches? I asked. She became defensive, then aggressive.

I asked about the positive results for JEV. Why are you so obsessed, she asked, do you want to have it?

By this stage the nurses had organised my medications. They gave me ibuprofen, and a sodium cromoglycate inhaler, which I had been prescribed to treat Mast Cell Activation two years prior. It had been a long time since I'd been able to get this myself, it was out of production.

The next day I was seen by a different neurologist. He noticed my tremor - something I've had as long as I remember, but never sought medical attention for. Hold your hands out, he instructed, follow my movements.

My tremor steadied. You've got Functional Neurological Disorder, he said. You'll be seen by a neuropsychiatrist and physio over the next few days. He left me with a post it note, directing me to a website with further information.

I was shocked, how could this be possible? I've meditated for years, I journal, and I know my own mind better than any of those treating neurologists knew theirs.

The next day, mid morning, my mind cleared. It happened in the course of about ten minutes. I asked to be discharged.

Over the next few weeks, however, the symptoms returned. My partner and I puzzled over what it could be: was it environmental, something in the home?

What were they giving you in hospital, he asked? Then it clicked. The sodium cromoglycate inhaler. It was sitting in my hospital bag.

I started taking it again. Like clockwork, the symptoms would disappear within the hour. If I missed or was late taking a dose, it would begin again: losing my words, fitting, having seizures.

I haven't been back to the neurologists. I cancelled all my appointments and asked them to stop calling me. I am left with so little respect for this discipline, and its lack of curiosity for a disorder which, according to them, is so prevalent.

Mast cell activation causes neuroinflammation. Ibuprofen and sodium cromoglycate are being trialled as a combined treatment for Alzheimers.

https://twitter.com/organichemusic/status/1540267791781175297?s=20&t=4fFlflWYhAwIhop7w_zc2g

So as I see it, either I have neuroinflammation caused by mast cell activation and I was misdiagnosed with FND; or, FND - at least for a cohort - is not what we're told it is.

Funnily enough, psychological stress can trigger mast cell activation. So treating stress might help with neuroinflammation. But this is only a small aspect of it. Its also triggered by chemicals, changes in temperature or air pressure, menstruation, just to name a few.

To those questioning their FND diagnosis, or resistant to treatment, you might be well served by looking into mast cell activation. To the neurologists, sending so many of your patients away to psychiatry, you have a lot to answer for.

There's so much to put together here, from autism to vaccine reactions to post viral syndromes and beyond. I grieve my own lost time; this is an abbreviated summary. I despair for others being left in the dark, questioning their own minds.

Signing off here, knowing its not really over. While I've found a treatment that is effective, its only a start: what is the underlying cause? Just putting it out there in the hope it might reach someone, doctor or patient, who might benefit #neisvoid #FND #neurotwitter