Abnormal EEG: Hi all, just had an EEG and my neuro... - LUPUS UK

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Abnormal EEG

katidid profile image
5 Replies

Hi all, just had an EEG and my neuro said that I have slow activity in my temporal and parietal lobes, mostly on the left. She said this is only found in certain conditions, one of which is lupus. We immediately got an MRI and thankfully no white spots. Anyone else have this? Nine years ago I was diagnosed with TLE, but with this new info we're thinking the memory problems, brain fog and "seizures" are autoimmune related not epilepsy.

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katidid profile image
katidid
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Penguintaz profile image
Penguintaz

Hi Kat!

I can't be definite on this but I know Lupus can effect the brain. A lot of people with Lupus suffer with light sensitivity and even have epilepsy as well.

It's good nothing sinister showed up on you Mri! I personally don't have too many issues with my brain except a bit of memory issue and rare brain fog but it is a common thing for Lupus sufferers.

Have they started doing tests for you yet?

katidid profile image
katidid in reply to Penguintaz

The EEG was the start and since it's abnormal, they've recommended further cognitive testing and, in the long term, regular MRIs to make sure the white spots or vasculitis doesn't appear.

johare profile image
johare

Hi Kat, I will speak from my own experiences. As with many of us, prior to any diagnosis or major illness I had a variety of random conditions. I never put them together. Small joint pain, migraine, IBS, etc. The more I worked especially using a screen or driving, migraines got worse, concentration deteriorated and initially I thought it was vision. Long story short, I also started collapsing. To complicate things I have an electrical problem with my heart so they were working through what the cause was. Interesting that you can have so many symptoms but you fall on the floor and people take notice!

The neurologist said the EEG showed temporal lobe changes. I have also have cognitive tests. These showed that my memory and recall has been affected. The MRI was ok. He says there is a cross over between migraine and epilepsy and that no condition is definitive or clear. He feels the lupus caused the neuro condition. I now take topiramate and am very stable. I get break through headaches but I need to watch blood levels as low hb affects my migraines/ seizures. Light, food, alcohol. late nights all make it worse.

So I have TLE caused by Lupus.

katidid profile image
katidid in reply to johare

thanks johare, i think this is exactly where we are headed and sounds like you've been through similar things as me. they have recommended further cognitive tests. you mentioned you did these? what are they like?

johare profile image
johare in reply to katidid

They were quite exhausting due to having to concentrate for so long after traveling to London and getting lost! I saw a very nice lady who asked me for a brief history of what my life style was due to illness, ie mother of four, a nurse, full time work. She then sat me down and started showing me some pictures of faces and then said we would go back to them. I did a spelling test that got harder. I had to choose the right words from lists to complete sentences. Do visual puzzels and maths number sequences. We then went back to the faces to see which ones I remembered. Interestingly I could spell the long medical words I struggled with everyday words. Misspelt words in sentences. Could do visual maths but could not do the numbers so easily. From this they could identify the part of my brain that had been affected, this helped me with my work issues at the time.

All the best and keep us posted.

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