My brain is not well. What is wrong with me? - LUPUS UK

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My brain is not well. What is wrong with me?

Biskuitka profile image
17 Replies

Hello everyone,

I'm not feeling well today. I feel very light and with straing muscular feeling in my arms and taights. My vision is slightely blure and I see white spots what restricted me from seeing well. I have also noticed that from few days ago my braing is not well at all. I've lost my bank card 2 times, I've promist a friend to call her to have my number, I took the phone looked facebook notifications and then put the phone down. Later on I realised that I forgot what I was doing for matter of second. Yesturday for lunch I had jacket potato with mash, only 10 min later i realised what I did. Few days ago I was also laying in the bed and felt like i was spinning and even though i was laying I thought I will fall from the bed.

My brain is not well. What is wrong with me?

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Biskuitka profile image
Biskuitka
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17 Replies
baba profile image
baba

You need medical attention urgently. Ring 111

Biskuitka profile image
Biskuitka in reply tobaba

I will see my lupus doctor at 3.30 today. Thank you for replying.

baba profile image
baba in reply toBiskuitka

That's MUCH better! I hope you get the help you need.

Biskuitka profile image
Biskuitka in reply tobaba

I hope so too but I'm worried if they say again yes this is normal. This is not helping at all, there are days it's really hard to exist, specially when no one whant's to understand how you feel.

Shari_bags profile image
Shari_bags

I feel your pain my memory has been so bad lately my words don't even make sense sometimes I constantly have to be rethinking what I said out loud I mean to say one thing but something else comes out. When I am having a conversation with someone I can't totally focus on everything they are saying. I forget things that I have done 5mintues ago I told my daughter yesterday to put the dog outside when I just did it (she told me). It is scary but I feel like the doctor doesn't believe me neither I hope they find out what is wrong with you. Best of luck

Biskuitka profile image
Biskuitka in reply toShari_bags

Hello

I'm really sorry to hear that.

My doctor saw me yesturday and said he will send me for brain scan, neurologist, psychiatrist.

I was crying yesturday when I was telling him how I feel. It's really strange ,I don't want to cry, my brain is telling me that this is not so serious but physically tears are comming ouT and my face makes sad face. It is really scary.

Silvergilt profile image
Silvergilt in reply toBiskuitka

While I'm sorry this is happening to you (I've felt it before as well, it's really terrifying), I'm glad your specialist is taking it seriously. Various GPs I saw before I was diagnosed blew me off and just tried to give me anti-depressants. But a friend with lupus explained to me a good portion of the problem is that lupus affects organs, and the brain is an organ, after all, so I was probably having brain involvement - may or may not be the case in your regard, but it weirdly made me feel better to know I wasn't just going mad and the illness was to blame. When my illness is controlled I tend to feel better so I hope you're able to get some answers and some relief soon!

I wish you peace and strength.

Biskuitka profile image
Biskuitka in reply toSilvergilt

Thank you for your reply

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply toBiskuitka

I'm glad to hear that your doctor is referring you for further investigations. Some of what you describes sounds similar to brain fog, which is common in lupus and some other conditions. You can learn more about this in our blog article at lupusuk.org.uk/coping-with-...

Biskuitka profile image
Biskuitka

He said also that he would like to now what and why is afecting the hormon of happiness.

It will take some time but i will get some results in the end. I will share when i know something.

mcjm profile image
mcjm

I feel your pain. I too have similar symptoms as yourself, I once went to visit my fil in hospital and asked for someone else, sometimes i speak and the words i were intending to say don't come out, i can't remember words, names at all sometimes. One of my consultants noticed this and sent me for a brain scan....in her words the report showed "significant brain atrophy" she kind of laughed to make it light hearted and commented your brain is shrinking!!! I was also sent for a nerve test on my right arm as I have been experiencing symptoms and was found to have nerve damage and on a separate test my ligaments at the elbow have bone growths on them and my range of motion is limited. Roughly about the same time i started getting double vision and reffered to optamoligist who told me that thenerves and muscles inmy eyes have also been affected and were likely to further deteriorate and to see her innovember again, more sight problems so yeah she knows her stuff and said that thebrain involvement and eye issues were connected. Going to see the neurologist in Nov and I am pretty scared to be honest as I know there is some seriousstuff goingon but i am a mumof a 4 and 5 year old. I am interested to hear how you get on as I too have issues such as yourself. Take care xx

Biskuitka profile image
Biskuitka in reply tomcjm

I'm so sorry😖

HannahLupus profile image
HannahLupus

I had this experience a few months ago, i have 'foggy brain' every now and then but this was different and was in the hospital for cerebral lupus last month. If this is your first experience like this too and you are photosensitive I would recommend to use tinted glasses/hats to avoid bright lights, stay hydrated and make sure you get good sleep. If you have headaches/nausea (the warning light for me) get treatment to control as soon as possible. Hope you feel better soon!

Biskuitka profile image
Biskuitka in reply toHannahLupus

Yes, I am photosensitive. I ware my sunscreen.

I have stopped prednisolon month and a half ago. Maybe it is posible to be reason for what I experience right now but it is more of new symptoms.

Yes , I also have a foggy brain but never lost stuff or make a action and later on realizing what exactly happened.

Sleep is really important to us.

Goldyukr profile image
Goldyukr

See the doctor. I had similar symptoms before I had a stroke - especially dizziness and fuzzy vision. Better safe than sorry!

baba profile image
baba

healthunlocked.com/hughes-s...

hughes-syndrome.org

Biskuitka profile image
Biskuitka in reply tobaba

Thank you!

I've done ful blood test and after 2 weeks I will know the results, hopefully nothing to worry about.

I will share what's happening to me.

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