LUPUS UK
21,652 members17,165 posts

Diagnosed with Encephalopathy

Anyone else out there with CNS Luspus have a encephalopathy diagnosis? I have seizures and the fog, but my latest appointment with my neurologist left me in tears. According to the tests my brain is continuing to slow down and it’s ability to keep up is less than that of a 90 yr old. I just turned 40!

I thought my CNS Lupus was limited to the seizures, peripheral neuropathy and memory stuff but when I read the full extent of the encephalopathy diagnosis I just was in shock. It fits, but I so scared and depressed. Am I really going to lose my mind? I’m petrified of what this means for the future. All I can see is being a burden on my husband and that there really won’t be much of me left in 10 years.

Feeling very alone. Nobody in my local support groups has any of the brain stuff or the widespread pain, so I’ve stopped going. We all have the same illness but it just feels like we’re on seperate planets. I’m being forced out of my job at the moment - because of “mental incompetence” - after a successful 15 year career. We have a lawyer but the stress of it is making my mind worse and taking me down.

I want to help my brain, but I just don’t know how. The docs just give me more meds, but there has to be other types of treatment? Is there such a thing as “brain PT” for us autoimmune folks?

Any help or support would be appreciated. I don’t want to feel like this is the end of the road.

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Oh I feel very much for you katidid....this is so sad for you right now. I have CNS LUPUS but not to the extent that you do. I have migraines and all that accompanies plus tonic clonic extremity movements and quite obvious brain fog.

Please don’t feel hopeless or alone, this forum is excellent and I’m sure the new meds will be of some benefit. Drugs in this category can take a while to be effective.

Keep your spirits up , it’s hard , very hard but you sound as if you are in a low right now and it can only get better.

Pursue the legal angle with work and try to just take one day at a time, cliche I know , but it’s all you can do.

Sending cyber hugs 🤗

P M

🐳

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Hello, please don’t feel alone or that it is hopeless. The brain inflammation some of us get from the lupus is often very reversible with the right treatment. Also I find the neurologists often lack knowledge of lupus so they hand out fairly random labels. Has your rheumatologist confirmed the diagnosis? I have brain/ nervous system involvement which the rheumatologists now generally call Neuropsychiatric lupus (NPSLE) and that covers everything from stroke, seizure, cognitive dysfunction, psychosis, peripheral neuropathy etc but the neurologists I saw hadn’t heard of this term and kept throwing out words that actually meant something different like CNS vasculitis or cerebritis which was quite scarey when I looked them up (that was after them initially saying it was paralysing migraines or functional!) but they just didn’t understand lupus sufficiently.

Did you have changes on MRI, CSF or EEG? What treatment are you having? I found 40mg a day of steroids quite quickly brought the inflammation under control and I start rituximab next week. Have you had that?

I asked the neurologists the same question about brain PT! They haven’t responded but I think there are courses that teach us memory/ concentration aids etc.

So sorry about your job 🙁. How long have you been in this brain lupus flare? I see in a previous post you mentioned low complement? Is that improving? My total complement was severely low in a brain lupus flare and research says that is quite common.

When do you see your rheumatologist next? I have found mine amazing and much more helpful and knowledgeable than the neurologists.

Xx

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I can only empathize as I have only the symptoms and not the diagnosis. My symptoms fluctuate with the flares and deepen in severity depending on other factors that I can't control. I'm divorced and feel like I am a burden no matter which way I turn. So, my advice to you is the same that I give myself: do the very best you can every day with what you you have and remember to tell those close to you how much you love and appreciate them. It will get better in time. Hang in there. If you need to vent, we are here for you.

D🏃🏽‍♀️

P.S. I also do word search puzzles to occupy my brain and sharpen my focus. I do it for short periods of time and work my way up to longer times as suggested by my OT.

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You can also ask to have your vitamin levels checked as low B1, B2 etc can cause cognitive and movement issues. I have parkinsonism that I believe is caused by the IBD and other autoimmune conditions I have struggled with for many years. I am finding some help by adding additional supplements (methyl pro B complex, ALA, GABA etc) and trying to follow a nutrient rich diet such as suggested by the Wahls Protocol. Also try to exercise in any way you can. With neurological conditions this is the one thing everyone agrees helps fight against progression. As others have stated you are not alone and there is hope.

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Hi katidid

I was sorry to read of your diagnosis and ongoing symptoms. Reaching out here, is hopefully, going to get you some good knowledge, as well as excellent support.

I am diagnosed hypothyroidism/hashimotos, ctd, sjogrens syndrome/?lupus. Thus, I visit various sites HU. So, I just wanted to share that recently, Heloise on Thyroid site, posted details of ' The Broken Brain ' series, which was very worth watching. If you Google it, you may, be able to catch it, a later date (I was very fortunate, to be able to do this for free, when I was late watching another series Heloise posted). Though you can purchase the series too.

The Broken Brain series, is full of advice on how to help brain function through nutrition, supplements, exercise, etc... Speakers, sharing their knowledge, are each, very specialised, doctors/researchers, in their chosen fields. Moreover, they are very passionate about helping people, and getting important information to us.

Please know, that research is ongoing, and seeks to find the best answers in helping us with brain function. There are foods and supplements that will help.

Wishing you well. X

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