CNS...what is it like?

[jamg3916]

Having read a little bit about CNS I was wondering if anyone who suffers with this could expand on how it affects you, what some of the symptoms might be....I am very concerned that this MAY be an issue for me, am not due to see rheumy till January so trying to gather some information. Thanks

[Sher78]

Really bad headaches, severe mood swings, visual & audio hallucinations, severe paranoia, mania, pins & needles, numbness, tingling, the feeling of something touching u or 'crawling' on u, dizziness or 'spinning' sensation, feeling 'not in u're body', uncontrollable anger outbursts, confusion, unable 2 focus or concentrate, unable 2 verbally express u'reself, poor dexterity & coordination, muscle twitches & involuntary limb spasms, loss of sensations (inability 2 distinguish between hot & cold etc), slow reflex/response time (some of the symptoms u can attribute 2 lupus etc or meds but if the majority of u're symptoms r new get checked out)

[brave]

for me C.N.S was the very first symptoms ,i spent a year at E,N,T consultants,neuro etc,they just said i had inner ear disturbance,lol!!!!well it wasnt ....lupus affects my cns quite badly,and now all the muscle tendon joint issues to follow ,its a crappy disease.

[jamg3916]

Thanks Sher78 and brave, Have had 'ear' problems...balance etc for years and has just got progressively worse....banging headaches etc.....depression, anxiety, have seen ENT several times they say no problems hearing OK...but it's still there and now causing me so many issues....got Lupus diagnosis last year...just all seems such a battle!

[Sher78 in reply to jamg3916]

I know it is honey, but it's 1 that u CAN control 2 some extent. I was diagnosed of having acute psychosis due 2 the lupus & APS as well as cns involvement so maybe some of my symptoms r'nt 'typical'

[jamg3916]

Thanks sher78....its sometimes like information overload and having to re-learn my life...