I’m writing, this evening, for the first time, in a long time. Not about party-gate 1, 2 or 3; not about Reckless Boris; not about my booster jab; nor about party-pooper Omicron. As ever, I’m writing about my health.
Right now, this boring topic has me in a pensive, yet creative, mood. For posterity, and to help others, I want to record what I know – and feel – at this time.
A few hours ago, my neurologist informed me that he thought I had a rare condition, known as Morvan’s Syndrome. I haven’t heard of it either. Of course, he wants to run some more tests, but he seemed unusually sure of himself for a consultant, at a first appointment.
Given just how rare this condition is – with only four reported cases in English medical literature, according to the British Medical Journal – this blog will be one the few pages about Morvan’s Syndrome online. Facebook – usually a good source of groups about rare health conditions – has only one group, with 89 members, and no postings in ten years!
Though limited information is out there, here’s what I know so far:
- Apparently, there’s medicine for this, which allows a sufferer to live a normal life.
- But other reports suggest that frequent blood transfusions will be needed, every three weeks.
- In 20% of cases, it’s fatal.
- It normally strikes men, at a similar age to me.
- It’s likely caused by an autoimmune condition.
- Covid has triggered more reporting of the condition, so now is a “good” time to be diagnosed with it.
- In the UK, only a lab in Oxford can do the analysis of the bloods.
- Cancer is often the cause of it (which I think is unlikely for me!).
- Some people spontaneously recover.
- Some sufferers can go for months without sleep.
During 2021, I’ve had a number of potential diagnoses. Like the others, perhaps this one will fall by the wayside, too. I hope so, but if this is my fate, I’ll lap it up. I’ll adapt. I’ll be useful. I’ll own it. I’ll wear it.