Don’t know why I asked to see it

[Buckley123]

Look at this anyone else have these results ??

This was 9months a go now anyone else had changes that have got worse

I know I’m a health anxiety idiot but I can’t help it

No sleep for me tonight

[KayHimm]

A radiologist or neurologist would need to tell us if our results are similar. I have no idea what some of these words mean. But I do have white matter changes that do not appear to be in the area of migraine-related abnormalities. The MRI a year after showed no change. So, YES, it is possible to not have progression. Of course you are worried. Anyone not worried about her brain is a worry.

Hoping your MRI result is unchanged. Take Xanax if you need it for the procedure.

K

[Buckley123 in reply to KayHimm]

Oh I really hope so can’t imagine how I would feel if there had been a change it’s a horrible thing to read in black and white.

Thanks for your constant reassurance and kind words it’s much appreciated ❤️

[Hidden]

My first neurologist asked me if I was sure I wanted mri if brain as well as lumbar puncture and EMG? He said that people often panic and wish they had never asked when they get copies of reports because most brains start to age pretty early and the reports make them sound awful when they are not.

I had it done anyway and it reads that there is white matter indicating small vessel disease a little more than expected for my age. The rheum who diagnosed my Sjögren’s got me in a complete panic when he said this was potentially brain involvement with the disease and would require Rituximab immediately. He kept saying “I don’t want to scare you but..”. In the end it has not progressed and the neurologist says it is some minor damage done - but not significant amounts at all.

Yes you are being a worrypot of the first order but it takes one to know one!! 😊🤗

[Buckley123 in reply to Hidden]

Thank you so much it’s is hard to read in black and white

I really Appreciate your constant support ❤️

[Roarah]

High anxiety has been proven to actually damage the white matter in our brains so try and do deep breathing and relax. I believe you will be ok but if there are a few changes you can still do things and live a great life. You rightly have a case of scanxiety but try not to allow your worry about tomorrow ruin today. Worrying will not change anything but it will rob you of this moment.

I have had two border zone strokes and that means my infarcts are vastly spread through out my brain's left side. Let me tell you our brains can do amazing things. Just like anxiety can reduce white matter volume with neuro plasticity we can slow down changes and with work we can reroute our circuits and many studies show that simple things like meditation can increase white matter volume. Try and remain positive until your doctors know more.

Good luck on Monday. You are strong, you have have a great family and a great team of doctors. You got this. Try to jump to the best case senerios rather than the worst. Xo

[Buckley123 in reply to Roarah]

Well if anxiety can cause it I’m surprised I have a brain left 😂🙄 I didn’t know all that can be done it all sounds scary in black and white

Thanks again for your kind words and constant support xx

[Roarah in reply to Buckley123]

Sweetheart, have you spoken to your GP about your anxiety? I know what how horrible it is to live with. I always thought it would just go away when or if everything was good but that is not how it works. And having severe anxiety leads to so many other diseases by causing brain and body inflamation. I am convinced I have lupus and APS because of my life long untreated anxiety.

There are meds, therapy, even diet changes that help us. I always thought daily butterflies in my stomach were normal. They are not. Since I finally started therapy to treat GAD and PTSD I never ruminate on my health, never jump to the worst case senerio about my husband's cancer scans nor my test results, I no longer stay awake worrying, I have not felt butterflies since February and my antibodies are going away, I am not fatiqued and my brain fog is gone.

Please talk to you doctor about treating you anxiety. After what you went through with your mom you could very well have PTSD. PTSD leads to autoimmune disease and dementia in multiple studies on first responders. It is important to take care of our underlying traumas when we have autoimmune and neurological issues to prevent further damage.

Take care of your whole self xo

[Buckley123 in reply to Roarah]

Yes I have had ptsd mentioned a few times I’m just normally very good at shutting down my feelings this whole health thing has taken me by surprise because I don’t have any control over it At least with my mum I could look after her.

I used to have my panic attacks I was homeless at 16 then I put them behind me when I had my daughter and her father was abusive he left and my ocd started

After that my son was born and health anxiety really hit the fan with ocd it was awful he was born with hirshsprungs and missing fingers and it went on and on with doctors missing tumors in his had and then panic with ct guided biopsy ect operations and antibiotics and then breathing issues it never ended until 4 years ago 3 months later mum came to a care home near me for me to look after. She was always chocking and that’s just a really quick summary of it all.

I think like many people I’ve spent my life in fright or flight mode.

I see a councillor once and she couldn’t get off my childhood let alone any of the above I just came back worse I find it easier to leave it in the past as much as I can dxx

[Roarah in reply to Buckley123]

My therapy is very oriented specifically to CBT not psychoanalysis and my past. My therapist mixes an eye movement desentization treatment with CBT mindfulness to help me learn to retrain my brain from being controlled by my PTSD. Eventually we may dive into my past but I am specifically there to help me learn to live again after my strokes and with my autoimmune worries lurking silently in my anxious mind. Maybe you could ask to focus just on your health anxiety not your past by but your present.

If therapy is not good for you, there are so many pharma options. Your trying to stuff the anxiety away rather than addressing it might be the cause of all that is ailing you. Being in flight or fight mode 24/7 causes increased cortisone, white blood cells, circulation disruption( i.e. Cold hands and feet ) and antibodies all which begin to to attack healthy cells. Inflammation is a direct result of chronic flight or fight syndrome. Heart disease, solid tumors, and autoimmune disease are proven to be directly linked to stress inducers. You need to figure out a way to relearn that instinct.

[AmyLindy in reply to Roarah]

Great assessment & advice: for me, and so many others, too!

[Lisalou19]

Good morning beautiful,

you are really having a tough time with your anxiety at the moment, which is absolutely normal.

I would say that the report doesn't have any daunting words that would have required you to receive immediate medical attention.

Have you spoke to your gp about having some counselling? where I live I was able to do a self referral through NHS iaptt website.

It seems as though you are drowning in your health worries and that is not going to make you feel any better during your process of finding the reason for your symptoms.

It may help to manage better with worry and anxiety.

I have recently gone through the worry tree. If you google it you may find a diagram of it. If we can limit our worries, we can reduce anxiety and with reduced anxiety we can achieve more clearer, rational thinking.

xx

[Buckley123 in reply to Lisalou19]

Hi my lovely

I know your right and tbh I vent on here a lot because I find it easier I don’t really talk at home my partner isn’t understanding at all.

I’ve tried councillors before didn’t help at all xxx

[Buckley123 in reply to Lisalou19]

It’s sad to admit that the only people I have to talk to that actually Liston and want to give me some advise are people I haven’t ever met x

[Lisalou19 in reply to Buckley123]

😢 I hear you.

Unfortunately invisible illnesses can make us feel invisible to others.

My support network is here.

It’s important that we feel some sort of support, even through people we have never met.

I opted for cbt therapy rather than counselling as I’d been down that road. Cbt is more changing the way we think and practicing our own thoughts.

Of course this is not for everyone but I think some things are worth trying as long as the Individual is willing to explore change.

If you need a phone friend to talk things through, you know I am here for you and I fully support you .

Xx

[Buckley123 in reply to Lisalou19]

Thanks very much mate I appreciate it same goes for you xxx

[Freckle1000 in reply to Buckley123]

Hello again Buckley - I come from a trauma ridden background - living the first half of my adult life - on the brink of homelessness - and with a not so supportive family ( understatement )- and a disabled brother who is somewhat reliant on me. Often its a bit hard for people to understand what that does to people's minds and bad luck can cluster - and it's all too easy to end up surrounded by unsuportive people in the three dimentional world through no fault of you're own.

I found coming here to be one of few places where I could talk to supportive people - and over time this has helped me get a better sense of myself and helped me recognise more readily how utterly awful some of the people and Doctors in my life have been.

With me - an invalidating abusive childhood set me up for invalidation in adulthood. Something I'm still working on.

If you ever do come round to councelling - it's important to find specialist who deals with our kind of complex trauma. Quite often psychologists aren't well enough qualified in this area and can well and truly put you off seeking more help.

- not saying you need a shrink - but if you ever have the urge - make sure they're a trauma specialist.

[AmyLindy in reply to Buckley123]

Me too, but alas- we are not alone, here!

[Freckle1000]

Hello Buckley,

I understand the attack of horror's and heebie jeebies when you read a neuro scan that isn't the perfectly unaffected brain you were hoping for. I went through a similar experience recently and its not fun at all.

However - there's are a lot of - 'appearances are non specific' and implying going on in you're scan. I think you should take comfort in the uncertainty of terms. No diffusion abnormality is especially good as ( I think it means all you're brain still has blood flow - is alive and working )

I'm not saying that you're neuro report is due to Lupus activity - but for me - It was assumed SLE had effected my brain when I was 15.

I'm now 51 - and only just learning about it - and other neuro issues from a car accident 16 years ago.

I was never told...….. which was both a blessing and a curse. With both instances I just got on with my life and assumed the obstacles I encountered due to brain involvement was just part of life and part of being me. I managed to get through 5 years of university - understanding that it was harder for me - but blundered through well enough.

Now - from recent scans and old medical records - I understand I have two lots of mild brain damage.

Recently two neuropsyche's assessed my brain/scans etc - and insisted that I didn't fall into the brain damaged category with a kind of - yes.....but no - but yes - but no, not really...….really...…...not really......no you don't have brain damage - response.

- I really doubted my mind that day : ) But when it comes to the brain there are lots of shades of grey and the unknown.

My intelligence and insight is OK - I just have to - quite literally do one thing at a time because I have some executive processing problems. I have a diffusion problem to one section of the noggin. ( and little ones here and there ).

In some respects I wish I never dug up the results of my own scans - as I've been a bit miserable about it ever since thinking I'm no longer up to the ambitions and future plans I had for myself. Its also added to the uncertainty basket of everything to do with SLE which is bad enough.

Its been a bit of a confidence destroyer. Instead of focusing on what I can do - which is quite a bit - I've become depressed because of becoming self conscious of minor deficits - and feeling a bit unequal in the world.

Writing this out - I can see I now need to move on and utterly forget about what I learnt about the state of my brain as I've rendered myself a bit helpless and dependent and lost a bit of hope - and it all needs to stop.

Whatever they tell you Monday - please don't fall into the trap I've been in.

I can see I have to go back to ignoring my brain and every blip it blips out - and start focusing on life - and living it to the fullest again - approaching life in the exact same way as before I had the scan. It's helpful know the - do one thing at a time thing - but I can see I need to stop thinking about it - and stop being self conscious about it - in order to have a good life.

I know this is all fresh and horrific - and you have every right to be anxious about it and what it all means - but there are a lot of people out there - like twitchy and myself - who are walking around without the perfect brain.

I wish I never looked at the scans myself !!! - and can see why Doctors have had a consistent policy of keeping this information from me.

Whatever they tell you Monday - just remember - you're the same person you we're before you had the scan. Don't let it define how you feel about yourself - or you're future.

Its just a squishy blob of processing stuff in you're head - and were all so much more than that.

[KayHimm in reply to Freckle1000]

The one thing, Freckle, that the MRI cannot pick up is your intelligence, determination and ability to understand others. That certainly comes through in your response. That MRI is not going to get in the way of your ambition!

K

[Freckle1000]

Thankyou Kayhimm.

It's a good time for me to get some positive feedback. It's not always easy to find the inner strength and fight through.

X

[Buckley123 in reply to Freckle1000]

Lovely response I really appreciate you taking the time out of your day to write to me I know I need to do all of the above and I am generally trying to change my outlook it just seems one thing happens and then another and then another I’m just constantly waiting for the next disaster xxx

[Freckle1000 in reply to Buckley123]

I think it's perfectly reasonable and rational that you're distressed at this point. Everything is new raw and fresh - and you're right - the trauma's associated with this illness sometimes just doesn't leave us alone. - just recover from one thing, only to be presented with another horror - Sometimes SLE problems do cluster. Just hold on for the day when things will eventually settle and even out and things will normalize.

Good luck today.

[NeuronerdDoaty]

In English: you have white matter plaque-like spots of unknown significance in the front lobes and temporal lobes. It’s called ‘deep’. However it doesn’t involve the three layers of meninges (leather like protection that covers your brain.

The structure of your brain is normal and unchanged. Nothing looks worse when viewed differently.

The neurologist gave no suggestions on why you have these.

[NeuronerdDoaty]

I get all my results. I read them myself and discuss the ramifications with my team. (My work team and my doctors.) I’ve been impressed with my body’s ability to survive what happens to it.

Good luck 💛

Doaty

[NeuronerdDoaty]

If you saw just my brain and didn’t know me you’d think I was drooling in the corner. KayHimm is so right. The brain is amazing. It’s how we use what we have not what it looks like on a test. Hoping today goes well.

[Buckley123 in reply to NeuronerdDoaty]

Thanks so much for your reply I understand what you mean Its just scary isn’t it to see it on paper xx

[jetjetjet]

HI - Buckley - years ago I was told i 13 f these white matter brain things and for the first couple of years they would re test and they remained the same and from then on they seem to just NOT pay much attention to them. when i speak to my PCP about it they ask if i want to go to my Neuro about it BUT he is a jerk and i have had a coupe of heated conversations with him about this and the APS of which at one point one of my other doc's asked him why he isn't doing anything more -- his answer was they had gave a look 4 years ago and they were fine !! So i either get a new Neuro or just let it ride . So i do as do you think about the issue .i am having memory issues now but what that means as the white matter is concerned ??i guess i should look for another Neuro. This with me goes back 8 years now . So i can see how you feel .