Anyone have experience of white brain matter changes?

[F1zz]

What does this mean?

[KayHimm]

Hi F1zz -

White matter changes are pretty common in lupus, I think. I am followed because of MRI that showed a few of them. They may mean different things depending on location but in my case it is called micro vascular cerebral disease. It means the small vessels of brain are involved.

Do you have neurological symptoms? Did the doctor say they would alter your meditation or repeat MRI in a few years?

I have been on statins and there is no change in MRI. I read they have an anti-inflammatory property that seems to help.

Talk to your doctor about your particular case .

Best of luck.

Kay

[F1zz in reply to KayHimm]

Thank you so much. I have a tremor, and a tingly itchy brain. The rhuem letter just said no vasculitus but changes in white brain matter which is of no relevance - that is literally all the letter said.

[KayHimm in reply to F1zz]

Maybe ask him exactly what he meant. You would have to see the radiologist’s report. It could be where the lesions were or maybe that the rheumatologist was referring to not being significance for vasculitis. Definitely good that there are no signs of vasculitis.

Overall, that sounds encouraging. Does he think your “itchy” brain and tremor are neuro lupus?

This is very hard stuff. I really do understand how frustrating the whole thing is.

[F1zz]

He just said it was tiredness but i explained it wasnt. It feels different. Can i ask to see the report?

[KayHimm in reply to F1zz]

I think @LottieLou96 is correct that the MRI did not explain your symptoms. But that does not mean you don’t have mild neurological symptoms from your lupus. It’s all complicated. The brain is complicated!

Your doctor had to put a diagnosis and reason for the MRI for the radiologist. The radiologist would list possible causes for the white matter lesions.

If you are not satisfied with your rheumatologist’s explanation, you should ask for a referral to a neurologist.

I had neuro issues before the MRI showed abnormalities. These things are subtle. A neurologist may be able to treat regardless.

If your head is not feeling right, keep pursuing this.

[LottieLou96]

You should be able to, it's within your rights. By the sounds of it the white matter changes are not of significance, which basically suggests that the neurological symptoms you have aren't as a result of that.

Again it's not 100%, and just intermittent inflammation in the brain not permanent damage is unlikely to show. But can still give some symptoms. Or thirdly, it may be peripheral origin.

[Freckle1000]

I totally agree with what KayHim's said.

I'd speak specifically to a SENIOR neurologist regarding what precisely was meant by changes in white matter. A propper neurological once over - checking you're tremor - ( possible balance - co - ordination etc. ) would be so important for you.

Rheumatologists can become a little distracted by their mind body connection theories at the expense of following through on neuro stuff.

I was initially diagnosed with age related white matter changes - but this eventually turned out to be ( apparently very rare - so don't worry about this one ) lupus vasculitis of the white matter.

It's presented much like MS.

Just recovering from a recent neural flare where a diagnostic MRI ( with de myelenisation protocols) showed it had become a bit worse than what could be expected from ageing.

My Neuro now points out all the small dots and patches that I've been pointing out to other Doctors for years- and tells me what I'd half suspected- it's Lupus.

My SLE is usually has no trouble been detected via normal pathology but with this I needed a lumber puncture post MRI because to all intents and purposes I was in remission. ( again I've been told rare ?!? )

The lumber puncture showed oligoclonal bands and lupus cells.

A tremor isn't a small thing. You know yourself wether its anxiety or not. Just an assumption myself - but I'm assuming from bitter experience that your rheumatologist has made an inappropriate assumption.

Keep pushing until you find a neurologist who doesn't make assumptions.

[F1zz in reply to Freckle1000]

Thankyou, yes they dif assume anxiety but I know when im anxious and im not, when I am i have never had a tremor x

[KayHimm in reply to Freckle1000]

As I said, the brain is complicated! And autoimmune brain disease is impossibly complex, right? Good thing they figured out what was going on with you.

I totally agree that a tremor shouldn’t be so easily dismissed nor itchy head. We all have different ways of describing our heads. 😅 These doctors have to be more alert and not just rely on an MRI, right?

I am told I am rare too but more in that I have UCTD but have lupus -like neuro issues. My neurologist did say lupus vasculitis is rare. Even at a major medical center where he was working there were very few admissions for that treatment. And he said they probably the same two patients. That does put things in perspective!

How are you feeling?

😘 Kay

[Freckle1000 in reply to KayHimm]

Hello again KayHimm. 🙂👋

You're right - lupus vasculitis of the white matter is very.....very rare. Must admit when the Neurologist explained this to me I didn't believe him....... at all - 😳🙃 as I'd had a delay in diagnosis due to the usual discriminations and assumptions - and the rest of my SLE has been pretty much stock standard run of the mill stuff.

I have some major swatting up to do on my own condition - and how to explain it........I know the internet tells me it's rare - but I can't quite wrap my head around JUST how rare.

Better chance of being stuck by lightning.

I'm doing a lot better now - The blast of Prednisolone and Mico has mostly halted the flare - apart from a recent little blip of travelling tinnitus and some other middle of the brain symptoms - briefly misinterpreting sound and visual stimuli - slight worsening of co - ordination- so had the pred upped a bit for three months just to be sure - but essentially It's thought I'm petty close to getting on top of it.

The last MRI showed all was stable - under control.

Just suspected cellular level stuff still slinking around a bit but even that's getting better.

Right now I'm just very.....very relieved.

I've been left with some troubles retrieving long term memory - but the memory is there - but because of this - I'm a bit slow at assessing and making quick decisions. Just a bit harder to get at at all due to lines of communication between the grey matter being disrupted by white matter gaps.

I was a bit shocked that my Neuro wasn't sure wether It was Lupus or MS - until the immunosupression worked.

It has effected me like mild MS. Co - ordination / balance stuff. Suffered some retina damage from high dose pred - and some lupus vasculitis at the back of an eye - both in the left one - so still got one semi good eye. Just a bit fumbley, bumping into things. My favourite activity at the moment seems to be beaking drinking glasses and not being able to see well enough to find all the fragments. 😄

How are you ?

This Neuro stuff is not fun. I hope you're ok and coping ?

It- 'id be lovely to have a black and white illness with a clear set of diagnostic and treatment critior wouldn't it.

x

😘

Spot.

[KayHimm in reply to Freckle1000]

Yes, indeed! The neuro lupus vs MS issue sounds like one of the most complicated in medicine. Like you, I was shocked when a new, young neurologist I saw when mine retired asked me if my doctors had ever considered MS with me. I nearly flew off the examining table. And I questioned her competence. 😅 Later readings would bring up the difficulty of diagnosing and how MS patients can have positive ANAs too. I have learned to be less quick to judge. She is an MS specialist and was right to give it some thought.

I have never heard that expression “swatting up.” Love it. I am always swatting up. I am doing well, thank you. I happened to ask my neurologist for an explanation of why my face drains when I lift something heavy as I was in the process of getting a puppy and concerned about caring for it. I knew it was the dysautonomia but wanted to understand what was happening. He gave me a good explanation (should have written it down because don’t remember much) but then said I likely didn’t process/ produce/ ? Epinephrine. Guess what he put me on .. ADHD medication! I think it is helping. I am able to bend over without too much light-headedness and am not feeling the need to march when standing. Cross fingers for me that this is the medication and not that I am just in a good phase. 😅

Like you, I am finally in a place where I feel I am being helped. There is no science behind any of these treatments for neuro lupus. They have to use expert opinion. The trend seems to be tailoring treatment for a more individualized approach. My neurologist allows me to take a medrol pack when I get a “weird head.” Some would say he is over-treating. He might say some are under-treated.

Glad you are stable. 😀😀

Stay in touch.

😘😘

[Freckle1000]

🙂🙂🙂Til' next time 👋