Lupus/ brain scan

Hi

New to the site so a little nervous, does anyone suffer from

confusion and anxiety I have also suffered from bouts of so the

psychiatrist told me psychosis which I believe are the confusion

hate to use the term psychosis( it's scary)

When I get these bouts I can be hysterically crying and everything

feels so far away also have panic/ anxiety, and weird thoughts

it's all so frightening also I get headaches and dizziness

Reumatologist referred me for brain scan which I had 3 weeks ago

due to see him next week, hopefully for results, would he have sent for me

before if anything was wrong, or from what I read about lupus and the brain

lesions can be present if this was the case would he just leave it until

appointment next week

Sorry to go on just everything still new to me

Thank you in advance for any replys

Manda

10 Replies

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  • Hi Manda and welcome to the site :)

    Sorry to hear you are going through such a rough time at the moment. Hopefully the results of the scan will give the answers that you need.

    I can empathise to some degree as I am currently experiencing many of the things that you mention above, been to seen consultant today, his response 'The symptoms that you are experiencing are due to Fibromyalgia'...! How does he know without checking?? Anyways, my point is, at least after your appointment you will hopefully have the answers you need, and be treated appropriately :)

    Don't worry about your posts here, you are not 'going on' :) The fantastic thing about this site is the amount of experience and information that everyone has to offer, in a gentle, calm and friendly way. For me it had alleviated my isolation and I have made some lovely friends.

    I really hope your experiences here are as positive as mine have been :)

    Hope you feel better soon, take care x

    .

  • Hi manda

    You are not alone in these feelings. If you put 'mood swings' into the search box on this site, you will come up with lots of others peoples similar experiences.

    I too, have suffered with extreme mood swings associated with my lupus. It was very scary, but fortunately I got great support from my GP & rheumy.

    I hope you feel better very soon. X

  • Hi Manda,

    I first became ill 7 years ago with acute neurological symptoms, so wasn't diagnosed with lupus until last year. So I attend Neurology and Rheumatology. Please try not to worry, I have had every neuro test there is and even though I have had a lot of issues, there are no lesions etc on my brain. It can feel very scary, but try to remain positive. I also have the same symptoms you describe, as well as hearing and smelling strange things. It can feel as if you are losing your mind, but you are not, it is the illness. I use relaxation and calming techniques when I feel the symptoms getting worse and try to have quiet time until it passes. Keep your chin up, positive thinking works wonders.

  • Alli can say is welcome to the Brian Fog (as many people describe it). This is such a funny disease (that;s how i like to think of it). Can't actually think of a worst thing to have! Lupus is the worst of the worst. The way i dealt with it is, your emotional state of mind will not alter your physical state (other than possibly make it worse). So i tend not to feel too depressed, or when I get depressed i let it happen, and dont fight it, just after a few days say to myself " now you have a few days feeling sorry for yourself, get back to how i was a few days ago". This approach does work not for everybody (I hate feeling sorry for myself).lt Might be because i was 16 when i was 1st diagnosed (and almost died) So I have been living with Lupus for more than half my life. The thing is you have to find what works for you, it could take you a day, it can take years to figure out. You have to find that balance where you are having a flare, but your mind is fine (that took me a good few years to come to terms with it), that's the most important part. Body may be broken, but the mind is firing on all cylinders. i like to look at Proffessor Hawkins when i think about that!! With most people the more you understand about Lupus the better you will be at coping with this most wonderful (NOT) disease. x

  • Hi Manda,

    I have also recently had episodes of confusion and brain fog. It is very scary but i am sure we will learn to deal with it in time. I am waiting on a neuro appt. Waiting is the worst bit and it is hard waiting on results. I am sure you will feel better once you see the Doc and he explains the results to you. I hope you get on okay, take someone with you to the appointment and take a notebook and pen with you to write things down. Hope you feel better soon.

    Best Wishes,

    Lupy lucy

  • Brain lesions are common in everyone as you age. Its just a part of getting older. How they affect you depends on thier size and location. A small infarct in the primary motor sensory pathway could be bad, for instance. On the other hand, quite large lesions can have no clinical signs. Did you have MRI? CT is not as sensitive at detecting small subtle but strategically placed lesions. Take any results from CT with a pinch of salt. If MRI, what sequences? Did they use a FLAIR squence to look at your white matter? I am doing research into brain imaging and inflammatory / autoimmune diseases (and I am also a rheumy patient for 25 years). Interested in how lupus affects the brain. Best wishes.

  • Im sorry ive been fighting lupus symptoms for years. Ive had a brain ct scan 2 times in the past that show nothing. If im reading your comment correctly ct scans can show nothing even though an mri might?

  • Hello

    I'm a Newbie and am interested in learning to if and how Lupus affects the brain.

    Since 2003 - 2016 had 4 Positive ANA 1 Negative

    3 Titers 1:160 & 1 Titer 1:80

    2 patterns Homogenous

    2 Speckled

    Get a butterfly rash how're all other test Negative (ESR-Anti SSA&SSB Anti Smith - DNA

    Had Brain MRI came back abnormal due to Striking Iron Deposits in Basal Ganglia also MRI C-Spine Mild Degenerative Changes

    One Doc thinks MS Another Hallervorden however also said if they can't figure it out send me to Rheumy at Hershey Medical to investigate Lupus

    First Rheumy said all my Positives were False Positves due to other Test being Negative .

    Awehaha sorry feeling a bit sarcastic been bounce around like a Rubber Ball from Doc to Doc!

    Anyhow still waiting to hear back from Neuro on C-Spine regarding her thoughts ( we have a portal which lets us see our medical records -labs & imaging results)

    So once I find out ( which I don't think will get an answer) I'll let y'all know.Thats for any help with this and please don't mind my adtitude I'm just tired & fed up

  • Hi

    Thank you to everyone for your replys......have had the results of brain scan and

    Rheumy said they was normal, what I was wondering is if lupus affects the central

    nervous system would that show on the MRI scan or are other tests needed to confirm

    this also could I still have the same symptoms depression, anxiety, depersonalisation

    panic attacks etc if lupus was affecting central nervous system....hope that makes sense

    Have appointment with psychiatrist next week, should I mention about CNS involvement

    and lupus

    Thanks

    Manda

  • Hi

    Thank you to everyone for your replys......have had the results of brain scan and

    Rheumy said they was normal, what I was wondering is if lupus affects the central

    nervous system would that show on the MRI scan or are other tests needed to confirm

    this also could I still have the same symptoms depression, anxiety, depersonalisation

    panic attacks etc if lupus was affecting central nervous system....hope that makes sense

    Have appointment with psychiatrist next week, should I mention about CNS involvement

    and lupus

    Thanks

    Manda

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