So let me tell you where we are in the process of the nhs deciding if my little man and I have Ehlers Danlos Syndrome
In March I saw the consultant rheumatologist who stated he was unable to diagnose me as that was the role of the geneticist, but he said I scored a five on the beighton test which is a test of flexibility and a five or over puts you in the EDS camp. He referred me.
Last month my little man saw his consultant paediatrician who originally came up with the EDS diagnosis last April. He again said little man is far too stetchy and states he thinks it's EDS. Another referral made.
Quite surprisingly the EDS clinic have married up these two referrals and we have a joint appointment next Wednesday. I'm now anxious about it.
Little man has twice been told he has EDS. A haematologist also suggested it was a collagen issue causing his capillaries to leak. My pain and exhaustion issues have gradually been getting worse over the last couple of years and my sister has similar and other issues. Having done my own research, listening to other consultants and discussing things with diagnosed EDS sufferers I am certain this is the issue but I'm worried we will be brushed off as we have been in the past simply because our bendyness abilities aren't in the extreme.
On Wednesday I will be unhappy if its diagnosed and unhappy if they don't. Wednesday is pretty much going to be a crappy day.