Hi 18yrs ago I was diagnosed with a positive lumbar puncture and MRI of the spine and brain which showed extensive demyelination in both areas
I had another MRI 2 years later and things were worse
As I also suffered from DVTs they decided to treat my condition as a clotting disorder “antiphospholipid syndrome”
despite all tests for this condition being negative
After warfarin, prednisolone drip , azathioprine and 6month cyclophosphamide drip
nothing slowed the demyelination
So I was discharged from St Thomases hospital into the care of my GP ( but to remain on warfarin for life to avoid future clotting)
I have changed GP many many times over the last 18yrs
However, i joined my new GP practice 2 yrs ago and the GP refused to reinstate my prescription for warfarin
So of course I recently had a DVT and a TIA
during the head scan for the TIA there was NO sign of MS
and I am now stripped of my multiple sclerosis diagnosis
I have been told it is not possible for no new lesions or evidence of old ones after 18yrs and the diagnosis is wrong
They have in front of them the report from my previous scan and lumber punture
The only consultant I have seen is the stoke consultant who has looked at my MRI with advice from the Neuroradiology consultant and have decided I do not have MS
On the CT scan it said asymetrical basal ganglion calcification but siad of no importance
My understanding is that I am too young to have calcifiaction (it can be caused by old age)
The other explanation I was able to find was it can be from previous damge to the brain
Or be a condition on its own
I am now back in the hands of my nightmare GP
who is angry and defensive having been told by the consultant in no uncertain terms to reinstate my warfarin
which he actually ignored for 3 wks and has only now reluctantly agreed my relationship with this practice is at an all time low
As I think they fear being answerable for my stroke
so god knows what I am going to do now