I'm at my wits end.
My partner presented to A/E four weeks ago with shooting headaches , blurred vision, imbalance and staggering. Many MRIs, CTs , lumbar punctures later they are still stumped.
He had a stroke a week after symptoms so presented.
Not a typical one in terms of the reasons why eg no clot/ no bleed etc.
His protein is high on lp.
There are daily changes on MRIs.
Scarring in new areas every day?
There is demyelination of the pons.
He has now got Bell's palsy for all intents and purposes but his left side has all but returned to full power.
He has also had a brain angio. No abnormalities .
He has only been treated with iv methylpred 1g daily over a 4 day period and got hallucinations and an acute psychosis.
He is in good form. Behaviour had changed a bit in that he is hyper sexual( in his mind, not acting out) and emotional( left sided affected when he had stroke)
They are awaiting csf results form uk( were in Ireland )
And many other specific neurology tests from UK ALSO.
I have a terrible feeling that this is progressive and life limiting.
His symptoms are changing every day.
One eye is blinking continually, the other bulging and not blinking at all. Half his Forehead smooth, the other half wrinkled as normal.
What can I do?
The team will hardly speak to me. I am his NOK.
My partner hasnt clue what the technical jargon they are speaking, means .
Wcc has reduced dramatically in his csf so he thinks all his well.
I feel sick.
Is there any way out of demyelination ?
Amy treatment ? Any ideas at all. I'm
So desperate for answers a month on...
Thanks for reading .
Is he going to die? Any experience, thoughts or advice most welcomed .
Thanks .