Carers UK Forum

Hi All,
After a year and a half of my wife being pushed from pillar to post within the medical profession and having various "woolly", unconfirmed diagnoses of her condition, she finally got a definitive diagnosis today.

The neuro doc she's been seeing recently confirmed today that she has "aquired brain injury" which has resulted from untreated encephalitis. Her brain stem has been damaged resulting in numerous physical, sensory, emotional problems.

I understand that many neurological conditions are very similar in symptomology but previous neuro's ommitted to do certain diagnostic tests and this has resulted in us having to fight, not only, the medical profession but also the DWP for benefits and SS for help with care. Unless you have a definitive diagnosis it's sooooooo hard to fight your corner and get what you are entitled to. If only someone had listened more carefully to what my wife was telling them in the beginning!!!! We can all dream, can't we.

My wife now has to go for neuro rehab twice a week plus physio and chiropracty. We're told that this combination of therapy along with the drug cocktail she is on may, or may not help. But anything is worth a try. I was wondering if anyone has any experience of the after effects of encephalitis and what we can expect. As a carer I can cope quite well with the physical aspects of her condition but struggle with her emotional problems. Any help gratefully received.

Regards,
Nyk

Hi Nyk,

I am in this situation with my husband, we are currently struggling to get a Brain Injury diagnosis...after two years one GP finally took us seriosly and has made a refferal to a neurospiclogist (not sure how to spell). I too find the emotional side of his difficulties very hard to deal with, I often feel alone because all this is not obvious and when tell I friends or relatives they asume we have marriege problems and advice us to separete if we can get on.
And of course since the medical side is not sorted...I can't get him on the benefits he should have...ESA rejected him and he only gets lower DLA...while he struggles on JSA...it been three years he is on job seekers and nowhere near to getting a job, still the preassure and stress they put him under, doesn't stop... is just not right!!
Can I ask how long it took you to get this diagnosis?

Ines

Sorry I just reread your post...where it says a year and a half.
After two years I hope we get somewhere soon...take care