SLE and possible CNS problems...: Hello! It's my... - LUPUS UK

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SLE and possible CNS problems...

heidieidi profile image
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Hello!

It's my first time on here would be really grateful for some advice and info as I've been experiencing possible CNS probs over the last few months.

I'm 29 and have SLE and was diagnosed in 2011, so far it has just been affecting my skin, joints and a bit of lupus fog. I'm on MTX injections weekly, and Hydroxychloroquine, and etoricoxib.I have recently been in a flare (low c3 and c4levels) and I've been having horrendous night sweats, lost weight, general weakness, tingling and numbness particularly on my RH side. I've also had episodes where I have been spaced out, not 'with It' at all, and not been able to get the right words out, found it difficult to read fluidly etc and poor temp control with high blood pressure (I'm skinny so shouldn't have high bp). I work PT in a coffee shop and At work I've been so clumsy, dropping things and smashing Cups and plates and having weakness in my right hand and arm which means I have found it hard to carry them! I thought it was just 'one of those things', fatigue whatever -but now it seems to all make sense.

I went to see the rheumy yesterday (who has been brilliant) and he done some neuro obs, and some of my reflexes are apparently 'brisk' and I have slight weakness and he has ordered a brain and spine MRI and a loads of blood tests.

Basically, I am a bit scared, and I'd love to know what the heck 'brisk reflexes' mean?

My dr said with all the symptoms it could be to do with my autonomic nervous system because of the sweats and how my bp changes from laying down to standing up. (I've never had high bp in my life!)

So in the mean time I am apprehensive as to how it is going to affect me long term, what does CNS problems actually mean, with prognosis etc. and does it mean long term probs with movement, parasthenia, co ordination etc?

I'd love to hear from others who have had similar probs and any info!

Thanks, Heidi x

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Jo883 profile image
Jo883

Hiya - just thought I'd reply to you - although I'm not too sure how much help I can be, I too suffer Neuro symptoms - I'm still trying to get to the bottom of all my symptoms. I wondered if you suffer with any back or neck pain at all? I only ask this as for years I've had spinal problems on top - for years I've been seeing an osteo to take care of my back and has been a godsend. However now when I flare it affects me neurologically - I think when I swell up internally it somehow presses on nerves - I have problems with my speech, my top right hand jaw goes numb, I have uncontrollable jerks, and sometimes my legs pack up just like my spinal cord has been snipped - I too have clumsy hands and drop things I also get pins and needles in fingers and thumbs, toes sometimes. It affects my right hand side worse also - years ago I had a MRI of spine I was in my 20s it showed cervical spondylosis and a herniated lumbar disc although I was told it was not necessarily the cause of my pain - I'm 42 now and still suffering I have just been sent by my rheumy to have another MRI of spine which I now have 2 weeks to find out what the score is - I think the lupus flares somehow affect my spine - maybe by swelling and pressing on nerves - I also think there is further degeneration happening. I have been pushed from pillar to post diagnosed and mis -diagnosed over the years and I think it has been a case of no one connecting the dots - I will let you know if I find out further. I also end up like I look like I've had a stroke as it affects my facial muscles which drop - I sound slurred when I talk and can't thread my thoughts to my speech. I did end up on the stroke ward this time last year as I couldn't feel the left side of my body or walk or speak properly - it has taken me months to recover with the help of the various meds and bed rest - but I'm getting there. I flare every month when my period is due so still get these neuro symptoms. I always say - when I get joint pain I'm fine until it hits my neck or spine as then I know it will affect me neurologically - I don't as yet have the answers so maybe my scan will throw some light on it? I have recently read that lupus can be responsible for spine probs - I suppose connective tissue is connective tissue!!! I have/had all above symptoms - my night sweats have gotten loads better since hydroxy although I will have the occasional nightsweats when I flare - I also had very labile bloodpressure in hospital - it would drop really low when I stood up but when they got me up to try to walk it would shot really high - they gave me no answers patched me up sent me home and told me to see my consultant. It's a slow process - dont ever give up looking for answers. I didn't think I was ever going to recover at one point - sounds like you need a neuro who specialises in connective tissues diseases - I wish you all the best xxx

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