Hi all

Not been on here for a couple of weeks because I got some very shocking news re the neuro difficulties I've Been having.
The upshot is for almost 8 yrs I've had neuro probs that get worse or change suddenly when I have one of the biological ra meds
Sometimes I'm just plain allergic
But this is after a few wks normally things start to go wrong
I spent a few wks in hosp over the summer being investigated again suffering troubles following enbrel
But I was told the drs were satisfied that this whatever it was is prob nothing to do with their meds at all and the ra itself.
Certainly no evidence of neuro damages....

So
I wasn't thinking I'd get much from the neurologist when I had my appt
Expected to feel dismissed
Tbh a bit like I'm making a fuss... I get treated like this a lot when I talk about not feeling my legs properly etc

Anyway
It's time I saw the neuro Anne p recommended I consider
And wow WOW what a difference

He cancelled his clinic and I spent 2.5 hours with him and he was very thorough indeed
The upshot is.....

I was right
It's to do with the biological drugs and my reaction to them but I have now got a neurological disease
I've got to go to Cambridge and London to see his team who he heads up to be further poked at
But there are clearly changes that are mainly affecting the Pons

My rheummy has said to continue taking the enbrel as I have no other options and bar loosing the feeling in my hands the side effects aren't as bad as loosing my swallow on one side which happened on cimzia

I just felt stunned
I was right
Just not believed.
Side lined

Oh Jen - what a shock. It'll take a lot of adjustments to that one - I'm so sorry you're having such rotten luck. Clearly the velvet bulldozer was right to keep pushing and I'm sure your strength will help you through this too.

Sylvia xx

hi Jenni,

so very sorry to hear your latest news,

as if you haven't got enough to deal with.

but so glad you had a good appointment so you know what's what and can get the help that you need,

let us know how things go on for you,

take care,

Suzanne x