I went to my appointment yesterday follow up from my last appointment a few months ago when the consultant told me that I had
oesteonecrosis in a lot of my bones, including my spine, it was caused by having Hughes syndrome for years! without anticoagulation therapy.Not suprising that I hate my Neurologist is it. He could have diagnosed me years ago ,anyway.
Because I was on Clexane for a couple of years it was decided by the Haematology that I should have a Dexa scan this showed I had dense bones rather than the oesteoporosis that they expected.
I had a bone biopsy and the surgeon local hospital said I had the toughest bones he had ever seen.
It was sent to somewhere in London for examination which is where it was discovered that I had oesteonecrosis.
The Rheumatologist was quite interested in my unusal problem he wanted to write a Reasearch paper on me. I had to give my permission. No name was used.
This was done and in the Next couple of weeks he is going to a seminar on it, In Berlin Germany.I have asked him to send me the paper
I can't remember who was going to attend, but he is known for his research.
I think after this he owes me a favour perhaps I could ask him to give the same speech to very large group of Neurologists.
Not sure if there is any treatment got to have blood tests 24hr urine collection ( hope I don't do more than the container full)
MRI to see if their is any change.
Then back to him for the results.I have told him that I am willing to have my body used for research ,once I am dead of course,
He just said I think we all should looking at my Husband, who was looking a little fed up because we had to wait a while before my appointment.
Pehaps one day you might see me on the Telly, wish I was brave enough.
Love Karen xx