Part one

[Buckley123]

Please read part one to two any advice xx

[Beverly]

Do you have numbness in your hands and feet as well as your other symptoms it may be the start of Sjogrens Peripheral Neuropathy it effects your eyes blurred vision and your balance.

[Buckley123]

Hi thanks for your reply yes I do on and off. X

[Hidden]

I have all this too. Just replied to 25clai’s post with my neuropathy story “in brief” if you’re interested. Other posts of mine about neurologists are further down - Sjögren’s letters 1 & 2. I’m struggling now with severe headaches and nausea - which only relieve when I lie down in darkened room. Very bad fatigue and brain fog just now. Seeing my neurologist no.3 in 3 weeks for expedited review. She’s the best one so far but you have to fight neurologists all the way over Sjögren’s neuropathy I’ve learned. They struggle to understand anything that isn’t first and foremost a neurological condition such as MS or MND or PD.

[Buckley123 in reply to Hidden]

Thanks twitchy

Appreciate your response.. it’s the twitching that worries me I even get them in my tongue. Swollen cheek bone one side makes me look odd 🤦🏼‍♀️ so much pressure in my face around my eyes and sinuses.

I am sorry to hear of your headaches must be horrible like you don’t have enough to cope with xx

[Hidden in reply to Buckley123]

I have the twitching everywhere too - hence my name. Are you under a rheumatologist as well as a neurologist? Is your Sjögren’s diagnosed by blood, symptoms or lip biopsy?

[Buckley123]

It’s not diagnosed twitchy I can’t get a diagnosis even tho I have the brain lesions I’m still Getting no where. I do have ent on the 4th who says he will do a lip biopsy but I doubt on that day.

I’ve been told it was ms then lupus then nothing bloods all normal . All in my head now because of my mum X