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Hi

My name is Sarah and after 30+ years of being treated seperately for various ailments have finally been diagnosed with Lupus. And yes, it makes sense & explains the fatigue as well as the arthritis & reyanulds & everything else

But does anyone else have expereince of neurological involvement? I've got balance, very reduced mobility, lack of right leg control & memory loss symptoms. They are hoping to start high dose steroids after a brain scan - Ive read that this helps my other systems but cannot find anything re neurological other than the depression & psychriatric bits.

ANy info or personal expereince would be very gratefully received
Thanks
 

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lots of us here have cns involvement. If you search these forums using key words like

cns lupus

npsle

cerebritis

neurological

etc etc

you will find a lot of information.

welcome to the forum

raglet
 

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Yes I have neuro involvement and a lot of my problems are mainly right sided.
You do adapt, and these things are not really noticeable to other people.
I fall over quite a bit, but even with that people cope.
x Lola
 

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neuro symptoms & falling over

Thanks for that & its so good to hear that other people fall over too ( well not that the fact that they fall over, but that its not just me that is doing it).

And thanks for the tips on searching.

Take care

Sarah:eek:
 

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Hello Sarah and a warm welcome !
There is a very wide range of CNS symptoms including movement disorders and demyelination that can cause symptoms resembling MS and other neurological diseases. Differing causes within SLE can cause similar
symptoms, just to complicate things
If you post separately in the symptoms section you will find many people with similar problems to yours and yes it is strangely comforting ! :)

Make sure you have been tested for anti phospholids - the tests are the so called lupus anticoagulant which consists of clotting tests and for anti cardiolipin antibodies. Please let us know how you get on and I hope the right treatment will soon be found. I don't want to raise false hopes because sometimes permanent damage has been done but there have been some truly amazing turn arounds with the right therapy

All the best
Clare
 

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Dear Sarah,

We sound similar, I am a long term patient who took alost forever to get diagnosed. (Strange thing,it was all diagnosed in 3 weeks flat when I finally got to the right place)
I do many strange things and by the evenings often talk complete rot.

x Lola
 

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I forgot to mention that there are some posts on CNS/NP lupus 'stuck' at the top of the Symptoms section.

:)
Clare
 

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Welcome to the site.

You are definitely not alone with the neurological symptoms you described. Mine are very similar. I hope the steroids can turn things around for you.

Are you having a CT scan or an MRI? Be prepared that the scan may not show anything. It took a long time before any actual evidence became apparent on mine.

Take care,
Lazylegs
 

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Hello and welcome,

I ditto everyone else and have been dealing with significant neuro issues for 3 years. Several neuro docs but no one has exact answers so it is good to be prepared for that. I've had 10 scans in the past few years and all clean so far.

Hang in there and good luck.

Jen
 

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hello and welcome to the site,

I am sure you will love this site as much as I have.. The inormation is plentiful and the support is boutyful... People are kind and friendly and will go that extra step to help each other... Welcome aboard..

Love penny
 
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