advice please

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

Sounds like you need to move gp practice, mulls, and perhaps try to see an ms specialist neuro. Best of luck whatever happens next.

Oh my word, this is horrendous…poor you indeed. This new GP is so out of order.

I would report this case to PALS …if they cant do anything, I hope they point you in the right direction. I wouldnt be happy at that surgery either.