Cognitive dysfunction in Lupus

[ayesham]

I am recently exoreiencing difficulties in understanding simple tasks and sometimes in task taking and even communication.Is it due to Lupus ?I have been diagnosed with lupus 3 yrs ago

[Natura]

I have terrible cognitive function lately. Sort of had my whole life, but getting worse as I get older. I cannot process what I hear. I have to close my eyes to process what people are saying on the phone. I also hear what is not said. Very strange. Got that from my dad. Upsetting in my relationships with my children and husband. I dont process what is said. Scares me.

Not sure if its lupus related.

Hope you can find answers.

[Kazunlocked in reply to Natura]

I feel for you. I was Dx with Lupus S.L.E. 5 yrs ago following major skin rash & hospital for 10 days. I also had a head to pelvis MRI which showed white spots in my brain stem & surprise, a clot in my lung (which I was fortunate they found & treated asap). I have had some cognitive testing & am in normal to high range. I am aware of losing some of my vocabulary & memory. I find it hard to concentrate & for several years could not follow a plot in a novel for example. Being an avid reader I found this tough. Couldn't hold the book either as it hurt my hands. Got 'lost' in conversations & often said totally wrong things to what i had intended. I also got 'lost' whilst trying to tell a story or relate a tale. These things have helped me a bit.

I have a Galx Note 6 smart phone with a stylus. I use it extensively for diary/ appointments, reminders etc. Apps for pulse & other health notes; to help with appointments I make a list of what I need to discuss & cross off as attended to. I have had much improvement over the last 5 years but will never be who I was. I hope you are the personality type that can goal set & work at problem solving. I am 58 & missed most of my 50's to Lupus, now I live with it & am almost at peace with it. Best Wishes to you. Kaz x

[silverbeatl in reply to Kazunlocked]

I too can relate to this. It is so hard for me to follow conversations and plots on tv or in books. The communication issues have made me isolate a lot because its just too embarrassing not being able to follow what is being said to me. I also feel like I don't have much to contribute towards conversations because I don't have anything going on in my life. I've had a lot of memory issues and it often makes me feel like I have early Alzheimer's. It sucks! I'm only 37! Thank God for websites like this because if it weren't for this, I'd feel so alone.

[LesJames in reply to Kazunlocked]

Hi, I like you have lost the 50 years. I am 60 this year and have been suffering like most people here but the medical team refuse to consider lupus. But this forum keeps me sane. Good luck.

[starbook13 in reply to Natura]

What you have just described I'm living through, to an extent. Thank you for sharing. It makes me feel better knowing that I'm not going crazy!! Memory not as good, not able to follow a plot, can't find the right words a lot of times , and I have a Masters degree in literature. I was beginning to worry a bit. Thank you!!

[Kazunlocked in reply to starbook13]

It drove me nuts initially when I couldn't get straight answers re Lupus & what to expect. Was I having myself on? Of course all the pals & all the family bombard you with well meaning advice. Go Paleo/ go Vegan/ go Gluten free etc

Exercise more, walk a marathon if you cant run ( to this I responded "I'll get back to you when I can walk to the letterbox" ). Now I'm learning to constantly work at filtering out pain & using minimal pain relief. Exhaustion (extreme exhaustion like turning a light switch off) has not let up in 5 years. Now I can (sometimes) 'recover' with a 40 min snooze. Not always but it happens. Urgh, it really is a maddening condition. I feel I do understand what many of you are experiencing. My best wishes to you all. Kaz x

[Silvergilt]

I'm finding that to be a struggle as well. I have a household with people on the ASD spectrum and they all like to talk at once, and I have to tell everyone to stop talking and do so one at a time. I don't communicate well on the phone anymore - I ask for everything to be done via email and I get someone else to confirm what I've read. Even if it's in a letter or written communication (which I hate because I always lose the paperwork or I can't enter it into my phone properly) I can't get it right: I've showed up at hospital on the wrong day even when I was holding the appointment letter. I've done that so many times the hospital now has me on their 'dementia reminder' line and sends me phone reminders of my appointments as well as a phonecall the day before if possible.

I can't read books anymore; can't hold the pages but also can't track the lines. I gave up reading for ages. Can't remember to get tasks done. I don't dare drive anymore even though I just got my license a few years ago - I don't have the awareness and I'm not confident behind the wheel (I've had some very near misses).

It's a good idea to get testing or get an MRI if you can get a specialist to take you seriously enough (I had a sleep test run, but I fell asleep and missed my appointment for followup - yes, really). I've been deficient in various things and with my rheumy's help things have improved a bit, but they're still not great. So, rather than pine for what was, I try and deal with now. I take my phone everywhere, and use it to jot down notes, either spoken or texted. I enter dates when I am talking on the phone and I do not wait. If I can't concentrate that day on the phone, I ask for a call back, or for an email - sometimes I have to be quite firm as the UK doesn't seem to have caught up with the 21st century, but they're getting it, bless them! I ask family members (repeatedly) to remember to speak one person at a time, and to keep trivia at a minimum if I'm trying to complete a task - big ask with my son, whose burning need to talk to me is usually video-game related. I don't read as well but audio books are brilliant and I am getting quite a collection of those which I enjoy very much.

It sucks, but there are ways to cope. Don't try and be stoic, it's too distressing. Try some coping mechanisms for your function while you try to figure out what might be causing it.

[Freddi1019]

Take Folic Acid....over the counter it will help. Depending on the medication you are on, also could be causing it. Continue to do your research. Every case is different .

[mark3600 in reply to Freddi1019]

The advice to take folic acid (fotale, B9) without medical advice is potentially dangerous advice if there is not a recent check on B12 levels (unless B12 is already taken with correct dosing and route - often oral B 12 is not well absorbed) especially if doses of above 800mcg daily are to be taken. Folic acid corrects the most obvious indications of vitamin B12 deficiency, anaemia with large red blood cells, but does not stop the effects of a shortage of B12 on the brain and so folic acid is best not taken for brain problems without knowing that Vitamin B12 levels are OK, especially if there are brain or other neurological issues. The folic acid can delay a treatable diagnosis of B12 shortage as most blood tests are corrected by the folate but brain malfunction due to B12 shortage can continue. When there is a measured shortage of folate or/and B12 it is important that there is an evaluation of why levels are low. Take medical advice rather than self medicate.

[Freddi1019 in reply to mark3600]

First of all I am not suggesting they take Folic Acid without doctors advice. My doctor prescribed folic acid..no one should EVER take anyone's advice to be healed without consulting a physician first . I thought this medium was one for information and to share treatments as a means to voice with our physicians...knowledge is power. Remember I did say each case is different .

[Nickymck]

Hi Ayesham, I was diagnosed with SLE around 10 years ago and my cognitive abiliyies were ok until round 5 years ago. I cannot remember names, places, I cant find the words I should use. I am still working and public speaking is part of my job. Increasingly difficult when I forget what I am trying to say. I had a memory test with the GP and I was perfect. The GP reckons I have too much info in my 'hard drive' and that I need to delete a few files, easier said than done. You can't chose what to discard from your memory. The ids think I am going senile and they may be right. It is so hard to accept all the parts of the illness and now the mid is going too. It is a cruel, cruel illness. I try to keep my mind active. I read but sometimes I can read a page and not take in a single word and have to reread.

I hope you find away to keep your mind active and working. Nicky

[Queen45]

Wow, this site is really great in a good & bad way.. I sure feel a lot better knowing it's not just me going through this memory loss or forgetting what to say right in the middle of a conversation because of brain fog or the disease just taking over...I thank each one of you for your comments, advice & sharing some experiences..it tells me that im around some people that understand my disease and discuss anything about it, some one will get the answer for me one way or another...Thanks

[mark3600 in reply to Queen45]

The concerns about disturbed brain function by some of the Lupus bloggers include descriptions of what are known by neurologists as "absences" and can be a manifestations of what are known as "complex partial seizures" and used to be called "petit mal". These can be associated with memory lapses and even with general unwellness and tiredness. Only some with this condition will have had major seizures (grand mal fits) but may describe other short lasting disturbances "funny turns' as well as the absences. When the reason for the symptoms is "complex partial seizures" there can be very good responses to treatment with medications as used for major seizures but do need evaluation by a doctor asked to consider whether the problems could be "absences" and merit investigation and treatment. They may or may not be secondary to Lupus affecting the brain (lupus cerebritis) in which case it is the medication being prescribed to treat the Lupus that needs adjusting as well as a trial to observe if there is improvement with medication to suppress possible partial seizures.

When seeking another opinion it will be important to provide a good description of what is experienced and also what other people notice eg does a conversation suddenly stop and then restart or/and are there obvious episodes of disturbed memory or other problem (in contrast to having them all the time). Write down what is experienced by you and what has been observed by others and maybe ask a direct question "could I be having absences" or "complex partial seizures" and could my Lupus ( or something else) be affecting my brain? Some of the blogs that I am responding to sound very like patients I can remember (I am a retired specialist) and some of the patients I have observed with treatment made amazing recoveries when treated with medication for the symptoms suggesting "complex partial seizures" (most often patients without Lupus as Lupus cerebritis is not very common). Some neurologist and GPs may put too much stress on testing, but this does need to be done but sometimes can be negative despite good responses to treatment when the history is typical.

[Queen45 in reply to mark3600]

Thanks Mark3600, i will bring this up to at the next visit to my rheumatologist...

[Paul_Howard Partner LUPUS UK]

Hi ayesham ,

We published an article about cognitive dysfunction (brain fog) in lupus last year which includes loads of information and tips. You can read it at lupusuk.org.uk/coping-with-...

[ayesham in reply to Paul_Howard]

Thank you so much,the article is very helpful .

[Author_ink]

My brain has severe memory loss after one year of having lupus. I can't remember even simple task.

[JanW]

Phew reading these comments is such a relief for me I've been worried I was getting demencia. Like others recently I've had trouble staying engaged and following a plot on tv like yesterday when we watched Endeavour I just couldn't keep up with the plot my mind wandering then covered myself by just agreeing with hubby's comments embarrasing. I've admitted it to him today and blamed it on brain fog he just gave me a hug said he loved me and not to worry. I'm 63 but it is still a worry, I've started to do crosswords and remember names of the soaps I watch etc and IQ tests which I do online. Huge sympathy to anyone with this problem.

[ayesham]

Thankyou so much guys ....I appreciate your help.The fact that most people are not even aware of many of the lupus symptoms makes things more frustrating but it is such a relief to find others who can support and provide information .

Thanks again