It takes a while for it to all sink in - what T H, the very nice South African neurologist, is saying. He shows us the X-ray of Robin's brain and compares it to the one from 5 years ago. He points out the deterioration- more white round the edges - says it's what to be expected from FTD ( front temporal dementia).
Then he says that Robin's arm weakness is not related to his dementia....that he has a completely separate and rare disease called Multifocal Motor Neuropathy with Conduction Block. It's an autoimmune disease in which the immune system mistakenly attacks the motor nerves as if they were invaders. It causes weakness but not loss of sensation.
It happens to 1-2 people in 100,000.
It's not life threatening and there is treatment. Five consecutive days in hospital having intravenous immunoglobulin, which are antibodies collected from thousands of people's blood ( it's terribly expensive). It can help restore muscle strength but may not last so it has to be repeated every three months. T H says it's worth a try. He can be admitted as soon as possible but it depends on the junior doctors strike.
Robin says,
Will I have to stay in the hotel?
He means the hospital. T H says although they are used to dealing with dementia patients they'll need my help with Robin on the ward. I'm guessing that means I can stay with him but probably not at night.
I'm feeling a bit shell shocked. Although I wanted it, I didn't even expect a diagnosis let alone one like this. T H says why one person should have 2 rare diseases, (FTD is not common either) is anybody's guess. I'm too tired to work out what it all means. But I don't know why I'm surprised really. Robin always has been a special case - one in a million.
No comments:
Post a Comment