Vasculitis lupus

[kingsnorth]

Does anybody have vasculitis affecting the brain causing neurological stmptoms ie pins and needles and leg cramps

[Hidden]

I have small vessel disease/ white matter on the brain and a very widespread, non length dependent small fibre neuropathy that causes pain and numbness now around most of my body - sometimes manifesting as a fine tremor.

I have Sjögren’s and was told initially that I had probable brain involvement but now they say that this is due to existing damage rather than to progressive disease and is completely unrelated to the neuropathy. I my be wrong but I think small vessel disease of the brain points more to vascular dementia than neuropathy.

[kingsnorth in reply to Hidden]

oh that's not good so do you have dementia? Im supposed to have an MRI but don't think I will bother I really don't want another diagnosis Ive only just been diagnosed with PBC as well and that was a shock. I have been prescribed gabapentin (think that's how you spell it) so I will see how I get on with that as far as I know nothing can be done for neuropathy or small vessel disease anyway.

[Hidden in reply to kingsnorth]

No far from it - I have pretty good brain power still I think! But both my parents and uncle had vascular dementia so it’s definitely in my genes. I had small vessel disease show in a brain mri over 3 years ago and then again 18 months on. But it hadn’t progressed at all so the rheum wrote to tell me and was only a little beyond what would be expected for a 50 year old. The rheum said it’s seen in Sjögren’s - but has nothing to do with my neuropathy or tremors I’m told.

PBC is another condition quite commonly associated with Sjögren’s. Do you have Sjögren’s perhaps?

I do agree that sometimes it’s better not to know when nothing can be done anyway. X

[kingsnorth in reply to Hidden]

Yes l do have sjogrens l was diagnosed with sjogrens and lupus about 13 years ago. Pbc in Feb. I had a brain scan about 3 years ago. Didnt hear anything for 3 months then a letter came with another appt l was going away so went to gp and asked what it was about he read the letter which said scan was clear but radiologist picked up what he thinks could be small vessel disease. He said you have dementia which freaked me out l never attended the appointment as l didntt want to know. My worst nightmare. I got a letter from neuro consultant saying he had looked at scan himself and it looks normal so im assuming he means normal for my age 65 then. Ive never been same since and convinced l have dementia so will not have another mri in case its rampant. I do get forgetful but only names as in watching tv and seeing somebody whose name l should know. Im 68 this year x

[Hidden in reply to kingsnorth]

Well I was told by neurologist that mine was normal at 52 so didn’t think too much of it until the rheumy who diagnosed my Sjögren’s said small vessel disease associated with Sjögren’s and checked brain scan and said likely brain involvement - got me referred straight away for another MRI muttering “not wanting to frighten you but..” - which terrified me of course! I’m told this is more common with Sjögren’s then Lupus - particularly as Sjögren’s is more associated with ageing than Lupus. So it could be this for you if you have both.

We all forget stuff! I’m terrible at recalling names and now can’t find my way out when leaving the doctors - they have to point or direct me! And yet I’m hoping to undertake a PhD if I can get the funding! X

[kingsnorth in reply to Hidden]

Do you think that vascular disease could cause neurological problems im just wondering whether the small vessel disease has got worse and that's what causing my symptoms.

[Hidden in reply to kingsnorth]

I know some forms of Vasculitis can. My rheumy team is shared between a rheum and a vascular doctor who specialises in Scleroderma. He has tried to explain to me a few times that our blood vessels bridge our tiny nerve fibres so the two are very closely connected but I don’t think this has much to do with the brain. I think/hope that your neuropathic issues are unrelated to altzheimers. This is certainly what I’ve been told. Headless chickens still run about so someone on a neuro forum said to me. Hope this is consoling at least. X

[kingsnorth]

I didnt know sjorgens is more associated with ageing you are so knowledgeable so pleased we chatted. Still not sure abt mri though my mum had alzheimers so very scared. Some people want to know some dont im a "dont"!! I live in Kent and diagnosed by Professor Graham Hughes when l was working and could afford private medical ins. Then transferred to St Thomas's london who discharged me because l had been stable now see useless rheumy locallt

[Minnskimoo in reply to kingsnorth]

Hi Kingsnorth.

I had a suspected TIA ( I had been having tingling in extremities and had drooping on right side of face ) - an MRI scan was requested as a result of this. Fortunately no sign of TIA, but white matter lesions were found during said scan. I was asked if I was a smoker- and my age. I was 54 at the time of scan and I am a non - smoker. The Consultant Vascular Surgeon said that it was most unusual to see this problem in someone my age!! And, If I happened to experience the same symptoms again to be referred to a neurologist. I was bothered by this at the time and requested a chat with my GP to hear what she had to say with regards to the white matter lesions. Her response was “ you might have had these for quite a while. And, had you not needed the MRI, would have been non the wiser!” However, I am still experiencing the tingling, pins and needles and intermittent numbness in my face. No firm diagnosis but there are many symptoms that are still prevalent, therefore the never ending quest to get to the bottom of all of this continues!

As far as ‘forgetting stuff’ goes, simply having a busy lifestyle and a job at the time - it was regarded as normal to forget many things. Unless of course, the level of forgetfulness was extreme.

I try not to dwell on the Vascular Dementia aspect as my dear mother had it.

x

[Treetop33]

I've been suffering from tightness in my head, light-headedness and dizzyness, a crawling feeling in my skull and headaches/sharp pains. I had an 'episode' last week where this felt very strong. I have APS too and am on blood thinners, but I plan to raise it with my rheumy tomorrow.

[johare]

Hi, I have as a main diagnosis Lupus and Sjorgrens. The neuropathy has come along for the ride. I have numbness in some fingers and toes. Pins and needles that come and go. Cramps, restless leg etc. I have skin colour changes, headaches and some blurred vision. However, due to the crossover with other symptoms with the autoimmune conditions, these could also be due to C5-C7 problems. Its always difficult to tell.

[kingsnorth in reply to johare]

Whats c5 c7 problems?

[johare in reply to kingsnorth]

Sorry I have degeneration to my spine in my neck, (age 54)

[kingsnorth in reply to johare]

Thats interesting about 10 years ago l had mri of back which showed wear and tear of disc l had been getting back pain. Im now wondering whether that could be my problem causing pins needles painful muscle cramps in legs and neck ache and nerve pain. I dont have back ache now so perhaps im clutching at straws.

[Minnskimoo in reply to johare]

Hi johare.

Sorry to read your comprehensive list of symptoms. As if one problem isn’t enough- how about a few more thrown in just for good measure!! Urgh.

By C5 - C7 problems, do you mean relating to points in the spine? I have just been diagnosed with Osteoporosis and wondering if some of my symptoms are also somehow related to this diagnosis too.

[Minnskimoo in reply to Minnskimoo]

Apologies-I didn’t scroll far enough and have since discovered your response! 🙆🏼x

[johare in reply to Minnskimoo]

Could well be. That's the trouble, we tend to have so many overlapping problems that any of them can cause the symptoms. Because of my degeneration the discs press on the nerves which cause the pins and needles and numbness. But also the nerve damage due to poor peripheral circulation has also caused some of the problems.

[Minnskimoo in reply to johare]

Thank you for replying, Johare.

It’s confusing to to say the least.

I have had many theories from the GP as to what the cause might be - ranging from sciatica, carpal tunnel, sitting for too long, poor circulation, osteoarthritis-and so it goes.

I also experience pins and needles during the night too- wakes me up and I have to shake my hands to bring them back to life. My feet also feel numb from mid foot to toe ends, as if I am wearing shoes that are pinching my toes (when barefoot). Makes walking first thing in a morning most uncomfortable!

What a job it all is!

x

[johare in reply to Minnskimoo]

Yep I was tested for many things they started at the top and worked down! Lots of nerve conduction tests first. It is confusing. They will get to the bottom of it.

[Minnskimoo in reply to johare]

Thank you!!👍🏼

[Hidden]

I think you need to trust your doctors on this matter as rheumatic diseases are often associated with neuropathy of the kind you describe. A referral to a neurologist would be the best idea I think. They wouldn’t insist on a brain scan for neuropathy - more likely nerve conduction tests for nerve entrapment caused by arthritis or connective tissue disease.