LUPUS UK
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Brain MRI white spots

Clusters of hyperintensities (white spots) in subcortical white matter. Wondering how common this is with Lupus?

Thanks

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A lot depends on your age and genes. White matter can be a normal part of ageing depending how much and where.

I do know that Lupus, Sjögren’s and Vasculitis can all affect the brain, showing as white matter. But I was told last week by my vascular doctor that this is extremely difficult to interpret with any accuracy. I have lots of white matter but two neurologists so far have said that it’s just about within normal range for my age. The vascular doctor and my rheumatologist say it’s related to my Sjögren’s and needs careful monitoring so I don’t know who is correct!

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Sorry dear Twitchy 🤗💕you sure are dealing with so much.

I loved your photo with the 🕶. You look so pretty.

Lots of 💕🤗Xxx

😊🌸

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Hey thanks. The thing about selfies is you can take them in a way which cuts out the blemishes and double chins lol!! X

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That’s wonderful. I don’t ever take pictures of myself. ( I’d break the camera 📷😆).But you really look young to me. Shouldn’t have to worry about angles. 💕🤗

😊🌸

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Thanks Twitchy. I’m 40. I’ve seen the images and radiologist’s report - that it’s inflammation due to autoimmune - vague as ever! I see my physician later this week - hopefully he has more insight. I’d be less bothered with the images if the spots were diffused throughly but it’s two clusters - but perhaps that’s normal...

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How old are you Twitchytoes im 67 and have white matter

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I’m 55. When first tested I was 51 but my neuro symptoms started in mid 40s.

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So is small vessel disease dementia. Im due to have another MRI for MS

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Well I guess lots of people have these lesions from a much younger age if they have AI diseases - but we only find out because of the MRIs. I don’t think you would be able to look at your imaging and tell anything if it’s hard for even a neurologist.

My first was done when I was around 51 and the neuro wrote “small vessel disease probably due to existing damage from earlier inflammatory events” in his letter - GP said could even have occurred a long time ago when I was young. The only real way to tell, so I read, is by taking a biopsy of the brain - and they obviously prefer not to do that!

Have you had a lumbar puncture at all? Mine showed a systemic process was occurring but that was all - could have been due to a number of systemic conditions from SLE to Vasculitis to Multiple Myeloma so very non specific.

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Twitchy,

You seem knowledgeable. Can I ask, please. I’ve had several MRIs due to chronic migraine since 2007 (age 35) with progressive white matter noted. I’ve been told I have Fibro and even had a radiologist note MS on a report. But doc said “not MS”. Because my bloodwork has no positive ANAs they quit testing after about 3 years but I hurt head to toe, every joint, with muscle spasms, and getting worse. Fatigue is awful, etc etc. i even have weird bruises and other odd symptoms. Any suggestions? I’m 46 now.

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I’m not medically trained so please don’t rely on anything I say. Lupus usually shows up in antibodies but Sjögren’s doesn’t show up in either ANA or ENA of up to 30% of sufferers I believe - so you would need a lip biopsy to confirm. I think lumbar puncture is used to diagnose MS as well as brain scan. If you have no bands between serum and spinal fluid then you are normal and no sign of demylenating disease. If you have unmatched bands ie more in one than other then this points to MS. If you have matched bands like me then this points to a systemic process such as Vasculitis, Lupus or Sjögren’s. Hope this helps a bit.

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My MRI in 2015 showed possible small vessel disease. I was 64 then is small vessel disease dementia? I have lupus sjogrens and now possibly MS

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Small vessel disease would probably show as vascular dementia if it’s extensive enough. But as we age all of us get it to a greater or lesser extent I believe.

They can’t diagnose by brain MRI alone - you would need to attend memory clinic for assessment. They still don’t know nearly enough about the brain to know what’s normal ageing and what’s vascular dementia from white matter on MRI alone.

MS diagnosis would usually require a lumbar puncture - especially in an older person. MS is more commonly found in young people and I’m guessing white matter would not usually occur for them - but it’s also a matter of which part of the brain it shows up in I believe.

My first neuro explained that this is why it’s not always a good idea getting a brain MRI done as we then worry about quite normal changes that occur with ageing!

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I was told that small vessel disease at 64 is quite normal and the majority but not all people of that age will have it. I am worried about my ms diagnosis becasuse of my age chances are it will be PPMS especially as im having pins and needles and charlie in both legs im really not coping with all this now my immune system has completely turned on me Feb l was diagnosed with PBC another autoimmune disease of the liver

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I know - it’s hard to just accept this stuff. I’m 55 and I can’t stand still without my legs buckling. I too get muscle pain and spasms - pins and needles all over my body including my face and mouth. Got an ultrasound on Thursday to check for renal disease.

But I tell myself that ageing with autoimmunity is always going to to tough so try to focus on what I can achieve as a parent, partner, friend and an artist - not on what I can’t or where all this is going.

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No, haven’t had an LP. Your doctor ordered it to rule out infection? MS?

I’ve been in a “flare” for a couple of months and it’s different than my old Lupus flares which only lasted a week or two. I don’t know if this is Lupus. It looks a lot like MS. Can Lupus mimic MS?

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LP was ordered by the neurologist for MS before Sjögren’s has been diagnosed. My Sjögren’s imitates MS brilliantly! But I have high inflammatory markers which wouldn’t show in MS because it’s not systemic. My lumbar puncture showed systemic process in paired oligloclonal bands - could be Sjögren’s or Lupus but not likely to be MS as this shows uneven bands in serum or CFS.

Only my small nerves and autonomic nervous system are involved whereas MS is large nerve fibres.

Yes I think Lupus can imitate MS pretty well too, as can Vasculitis. And all these diseases are autoimmune and can overlap so answer is yes Lupus can copy the symptoms of MS but would be treated very differently.

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So what i am reading is all of you and myself have same symptoms had all the same tests.. and still are not sure what is going on. I never would agree to lumbar punch.. but had brain mri. white matter was there.. one doctor told me might be MS.. he sent me to neurologist who said it looked like a stroke. I do have vascular blockage 100 % in left artery of neck. Had surgery at age 48 to fix.. was blocked same amount 1st year after surgery.. and every year 50 to 75% until 2010 then blocked completely.. now the strange thing about this is nobody got excited about how blocked IT WAS after the surgery. And that is the same amount it was blocked when they did the surgery. Once it is blocked 100% no repair . So wish i had never done all that to begin with.. My pain in joints started age 32 Have been told so many things by so many doctors One of my favorite is maybe i should color my hair. .. that would make me feel better this was way back in my 30's So I might have ms. borderline lupus, fibromyalgia, chronic fatigue, depression.. Lyme and Disease rocky mountain spotted fever... or just all in my head. which has been said to me.. Or I was just trying to get Social security.. wow I turn 60 in june.. so ya know not feeling good and it has gotten worse over the years what use to come and go. Is not all the time. I have given up on doctors. My doctor I do see for blood pressure med. gives me tramadol which helps some with my pain... use to take Ibuprofen,, but that has caused gastric problems had all those tests too LOL so screw it. has not killed me. I am doing the best I can. I don't have much of a social life as no energy to deal with people thank god I like to read and watch movies

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Dye your hair? Brilliant!

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LOL yeah kinda turns me off doctors with god like attitudes ugh

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Yeah, and let’s all throw on some lipstick!

Compassion should be an entrance requirement to med school.

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Ok. That’s very helpful - thanks Twitchy. I’ll see what my physician says about the MRI. LP is a good idea.

If the neuro symptoms are due to Lupus, which is better - a neurologist or a rheumatologist?

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They might not think you need an LP as it’s pretty invasive and the brain MRI results may give them enough info. I had mine done in same day prior to rediagnosis of Sjögren’s - so they blamed RA instead.

Regarding which type of doctor - it really depends on their special areas of knowledge. Both the neurologists I’ve seen have been hopeless for me and caused more problems than they have resolved. The first thought Sjögren’s always shows in the blood and the second is heartless and dismissive and has made big mistakes with me.

I’ve had 4 rheumatologists and 3 have been good - present one I’ve only met once but she is very good and I see the excellent vascular doctor she shares CTD clinic with every 4 months. I’m waiting to be seen by a 3rd neurologist for a second opinion now.

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Ok. So - either you’ve had bad luck with neuros or perhaps it’s better to be under a specialist by the disease vs how it presents.

Have you used steroids and if so, did they reduce your neuro symptoms?

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Well two GPs have told me that, in their experience, neurologists are an arrogant, strange breed of specialist - but I’m sure there are quite a few exceptions to the rule!!

Steroids are a mixed blessing always for me as they make me manic, even psychotic - but relieve my dizziness- disequilibrium and reduce pain so not sure if I could say they work or not really.

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Yeah, there’s always exceptions - that’s why we keep digging. Hope your next neuro is better.

I had steroid injections roughly 6 weeks ago - for me, fast acting improvement. Symptoms are worsening over the last few days so perhaps they’re wearing off.

All very helpful information. I’ll see what my doctor thinks about MRI results and go from there. Thanks.

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Mine at 37 were more than expected for my age but atypical region for MS. At 44 the consultant at St Thomas told me they were caused by TIAs from having Lupus anticoagulant which is why I have to take warfarin. I did come off warfarin at one point to replace with aspirin and omega 3 but new MRI showed further lesions so I was put back on warfarin for life. I have an organic mood disorder caused by Lupus similar to bi polar which may be the result of these lesions but they can't say for sure. There is still too much they just don't know. Xx

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Hi GF,

If you don’t mind me asking - what region are yours in?

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So what i am reading is all of you and myself have same symptoms had all the same tests.. and still are not sure what is going on. I never would agree to lumbar punch.. but had brain mri. white matter was there.. one doctor told me might be MS.. he sent me to neurologist who said it looked like a stroke. I do have vascular blockage 100 % in left artery of neck. Had surgery at age 48 to fix.. was blocked same amount 1st year after surgery.. and every year 50 to 75% until 2010 then blocked completely.. now the strange thing about this is nobody got excited about how blocked IT WAS after the surgery. And that is the same amount it was blocked when they did the surgery. Once it is blocked 100% no repair . So wish i had never done all that to begin with.. My pain in joints started age 32 Have been told so many things by so many doctors One of my favorite is maybe i should color my hair. .. that would make me feel better this was way back in my 30's So I might have ms. borderline lupus, fibromyalgia, chronic fatigue, depression.. Lyme and Disease rocky mountain spotted fever... or just all in my head. which has been said to me.. Or I was just trying to get Social security.. wow I turn 60 in june.. so ya know not feeling good and it has gotten worse over the years what use to come and go. Is not all the time. I have given up on doctors. My doctor I do see for blood pressure med. gives me tramadol which helps some with my pain... use to take Ibuprofen,, but that has caused gastric problems had all those tests too LOL so screw it. has not killed me. I am doing the best I can. I don't have much of a social life as no energy to deal with people thank god I like to read and watch movies

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Do you live in the US? Somethings doctor say are so ridiculous.I just had duplex doppler of my carotid s and eye orbits; still waiting results. Tests done because of temporary vision loss in left eye which was very alarming to me and presence of C-ANCA antibody; vasculitis or not??

Are you saying that you had surgery to unblock your neck arteries and it is still blocked, or re-blocked.? And am curious that you are have been given a prescription for tramadol? It seems most doctors are terrified to give anything in the "opiate family." for fear of losing their licenses after the new state and federal governments' laws have clamped down on these drugs.

I do know how you feel to be ensnared in the medical system; since stress is the worse thing for autoimmune dseases, doctors do not realize how stressful the never ending tests are, treatments, referrals to other specialists; not to mention the ridiculous comments they make. it takes over your life.

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I saw my GP. He now has a new theory for my symptoms based off the radiologist’s report. He had not looked at the MRI images. This surprised me. Is that typical? He said he would look later that night when he got home.

I think he’s smart but I also think he’s overworked and that I’m falling through the cracks.

So I’m posting to ask if this is the norm - do physicians commonly trust and treat off a report without first looking at the images?

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Dear maye1,

I think it is the norm; in my experience, I have only seen one advanced nurse practitioner in pain management actually look at a scan of my back. They rely almost exclusively on reports. Years ago, I had a parathyroid adenoma removed from my neck by surgeons in Florida; parathyroid surgery is their specialty, and it is all that they do.

These surgeons are very skeptical of scans in general, pointing out that a scan is only as good as the skill of the technician who takes the scan and the skill of the radiologists who read them; in their experience, at least 50% of the reports are wrong. Many times doctors order the wrong type of scan ; ie. CT scan when an MRI or a PET scan is more appropriate, etc.

All health practitioners, except for a rare few, take big shortcuts. The health care system leaves much to be desired. The best doctors put the scan up when the patient is there and explains what he or she is seeing to the patient.

Best wishes...

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Ok. Thanks Alliand.

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