Visit to Neurology - feeling blue

[Maya23]

I was referred to neurology due to the nerve pains that make up the general 'noise' of symptoms my body makes:

-shooting electric shock like pains on left side,

-burning sensation in left arm,

-stabbing pains in fingers and toes,

-all over prickling/hot/cold sensations during flares

-drunk feeling I sometimes get with vertigo and slurred speech

The neurologist was very nice I'm relieved to say I didn't come away feeling like a hypercondriac!

He said he'd send me for an MRI to rule out Vasculitis, and if that came back negative, then do nerve conductivity tests.

I'm left feeling rather up-side-down emotionally. All the while I was ignoring the nerve pain and pretending it wasn't a 'thing' I could live in denial, now it's being addressed it's turned into a 'thing' which is scary. Vasculitis can be secondary to Lupus and it could account for many of my symptoms (especially as it also includes joint pain and fatigue, and can present asymmetrically - and most of my nerve pain and the worst joint pain comes on my left side). Does anyone else have vasculitis or know about it in relation to Lupus?

Thanks.

[Maya23]

I just found this info on the Lupus UK site:

lupusuk.org.uk/want-to-know...

[Barnclown in reply to Maya23]

Good link, dryad, thanks: hadn't read that article yet: good link!

Am glad the neurology consultation came up trumps: sounds like you've landed a good consultant, no prob!, all things considered....but I do feel as if I can relate to your feeling blue...I get that way after even 'good' consultations sometimes - especially when I realise that I'm about to go through yet more appts, tests & have to learn more about stuff I basically wish wasn't happening to me...+ wish I could just go on coping with via lifestyle management & by generally learning to adapt to & compensate for troubling symptoms...but hey: just sharing these feelings can give me some relief from the blues, so I hope you're beginning to look on the bright side now....meanwhile, am sending you a virtual hug!

Rheumatology has been watching me closely re vasculitis, because several of my chronic NC symptoms could be due to vasculitis (my chronic NC symptoms include the sort you're having....+ other symptoms which are definitely vascular, eg I'm prone to what my drs call vascular rashes, but so far these have been responding positively to prescrip topical steroid betnovate).

Well, because my rheumatology clinic specialises in vasculitis & lupus, and because daily Mycophenolate + low dose pred tapers area damping down most of my vasculitis-like symptoms, my drs are saying I don't need to see neurology for the time being....

+ Myco & pred are used to treat vasculitis anyway....so, I feel relieved to be avoiding neurology for the time being...but, when you report that you've seen a good autoimmune condition experienced neurologist, I feel a bit less daunted by the prospect of a neurology referral....so thanks dryad!

Take care, take heart & keep your chin up

XO

[Maya23 in reply to Barnclown]

Thanks Barnclown. I've decided to take a week to rest and rejuvenate - which thankfully coincides with a planned trip to Devon (I was supposed to be doing some work but I'm going to only do the bare minimum). Good to hear how you are managing your symptoms too.

x

[Barnclown in reply to Maya23]

Sounds good! Am just so glad neurology didn't blank you, or mess you around. I do hope, too, that at some point they've done an MRI of your spine (especially your cervical spine)...because symptoms like those we share can involve some orthopedic element, which needs to be taken into account and treated too xo

[Elfie1]

Hi there, I too get a lot of those symptoms (I have cerebral vasculitis +aps. Make sure you get a scan which shows up the blood vessels to rule this out. Good look. Elfie

[Purpletop]

The Vasculitis UK on healthunlocked is very useful if you just want yo see what that's about - it could be a bit daunting at the same time, particularly if you weren't prepared for this to come up in your discussions.

I'd wait for the results before worrying, though, it might not be vasculitis, why scare yourself silly.

[Maya23 in reply to Purpletop]

Good point Purpletop - I will try and stop worrying and focus on nice things instead. I've put some time aside to rest, so hopefully that will help.

[Lupylass]

Hi there.

When I'm having investigations I always tell myself it's to rule things out, to try to save myself worrying about what I may or may not have.

I have vasculitis but it is well controlled on the same meds as

I'm on for lupus. I've had symptoms similar to you're describing but they've gone for now. In fact I'm really fit and well at the moment.

If it does turn out to be Vasculitis perhaps knowing what it is will lead to adequate treatment and help your symptoms improve.

Good luck with the MRI. X

[Maya23 in reply to Lupylass]

Thanks Lupylass - that really helps

[KeiraMcC]

Hi,

I have similar symptoms on the right side of my body!!! Also have had the vertigo, slurred speech and feeking like I'm drunk!!! Saw a Neurologist with MRI before Lupus was diagnosed but vasculitis was never mentioned! Rheumatologist also never discussed this but very interesting. Keep us posted and hopefully you'll get some relief soon.

[Maya23 in reply to KeiraMcC]

Thanks - will do.

I'm hoping they'll rule out Vasculitis - it's supposed to be quite rare so I'm holding onto that fact!

[Lucy74]

That's weird - I've had some of these symptoms and just thought it was me. This was before I was diagnosed with Lupus.

I've had the shooting electric shock things - they are quite mad, the sensation in my left arm and hand, as well as pins and needles/numbness in my hands and fingers - bit worrying really, and the drunk feeling with vertigo and slurred speech. Anyway, my personal theory is that this is some of the stuff that happens to me when I go in the sun - last time it happened badly was before I knew I had Lupus and was trying to de-sensitise myself to the sun. Doh! I didn't know! I'm convinced the sun causes neuro stuff with me but the Rheumy just looks at me blankly when I talk about it, so I don't really mention it now. Anyway, as long as I don't go in the sun, these things don't seem to happen.

Nobody's ever mentioned Vasculitis to me. Hopefully it's a passing thing for you too, and not vasculitis. Keep well.

[Maya23 in reply to Lucy74]

Yes I've noticed that all my symptoms get worse after being in the sun so I avoid it as much as possible.

I hope you keep well too.