Brain involvement?

Brain involvement

Can anyone enlighten me about this? I have been very concerned about my slow retrieval of facts/names. Sometimes I start a statement only to find I have lost the plot by the end of the sentence. Family very supportive but they are concerned too. At 66 is this old age starting, or cos of Lupus?

Lupus, Menieres, diabetes AI Hepatitis, photophobia, losing hair etc

Thanks in anticipation xx

7 Replies

  • Hi Footygirl,

    Brain involvement is extremely common in lupus which can cause symptoms such as memory loss or 'brain fog' as it's commonly referred to by lupus patients.

    Here is our factsheet 'Lupus and the Brian' if you wish to download/read it -

    Best wishes,



  • Lupus most likely - the neuro call it 'brain fatigue'. It isn't like dementia, where the cells are destroyed, more like the brain is "tired" and processes everything a lot slower. Like your computer when the broadband is slow, it works but it takes ages.

    If it becomes worrisome, you can ask for an MRI to make sure that there are no brain lesions but otherwise most of us just live with it. Mine tends to improve with steroids and that calms me down because it shows that it is due to inflammation/lupus. And I had many brain MRIs (for other reasons) and they're all normal. But unless I spell out stuff to remember, or write it down, the information goes away in a millisecond and then I try so hard to remember, so annoying!

  • That is so helpfull

    Thanks so much Hayley and Purple top

  • I'm pretty sure I have hand this twice. The first time I was about 38. this time I am 64 and was in a nursing home. The first time, I saw a report that said pre-dementia, my H said I had the equivalent of a closed head injury. I recognize dementia, Alzheimer's, the aging brain. As a social worker, I have done nursing home screenings, and had older adults on my caseload. Believe me, I was SCARED last year. I don't know that anyone can say for sure. What I have been doing, is pushing myself to accomplish increasingly more complicated tasks. Cooking was a huge chore and I only did simple meals. I now cook pretty much the way I did. Reading was just words and many words I didn't know. I now read an entire book and retain enough to follow the story, note the style, etc. I did get lost walking and used a cane. I can usually find my way back now and do not use the cane. You get the idea. My organization, thought processes usually take at least 18 months to come back.

    I still lose words, but I don't get upset with myself. The words typically come to me later. I think it is good to surround yourself with people, paper games (word scrimmage) and set yourself to chores that might work and might not.

    Good luck, Footygirl.

  • Hi Fighting

    I have received Professor Hughes' book "the Brain and Other Animals". It is a revelation. Case studies highlight the many facets of " brain fog" and have given me hope that these studies may help me. You have done so well yourself fighting, that you must be proud of yourself.

    I hope you continue to be well.

    I shall ask my GP some questions the next time I see her.

  • Thank you, that was a very nice complement. Accidently finding this support group has also been a huge help this time.

  • I don't know about lupus side , but don't give up . Try do more brain activities like word search, Sudoku etc. I had major stoke in 2009 which left 50% brain damage. I been on trails at the UCL in London looking at the brain after a stroke and they can't believe what I can do with damage. Fare dues I can't do as much as I use to.

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