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Severe brain fog with possible MCTD

Posted by shelleyas @shelleyas, Mar 29, 2021

I finally found a rheumatologist after 4 years of issues who ask the right questions and took the time to go through my test history. She has somewhat diagnosed me with MCTD but is working with other doctors to confirm. She started me on Hydroxychloroquine to see if it helps. I have a lot of symptoms like my hearing is acting up, Trigeminal neuralgia, joint and muscle pain/stiffness, stomach issues, rashes, etc. The ones that affect my daily life is my brain fog and fatigue. Before this all started I was someone who never sat still. I have been creative my whole life and did arts and crafts, woodworking and somewhat mechanically inclined. I was the person in my family who people would come to for help on figuring out things because I have a very curious mind that never stopped thinking. I am not even close to that person anymore. I have fatigue and brain fog everyday and some days the fog is so bad I feel like I can almost see a veil of it. The closest to an explanation is if you’ve ever seen The Nutty Professor where he starts to lose brain function and goes dumb over time. I am forgetting simple words, sometimes can’t complete sentences. It’s difficult for me to express feelings or explain things. I am making dumb mistakes and can’t figure things out anymore. My art and craft projects have completely stopped and it’s like that part of my brain no longer exist. I work for my spouse now out of my home but it’s becoming more of a struggle by the week. I take Adderall and it’s the only thing that gets me functional for a limited time but it’s getting to where it’s not helping much. I could sit and stare for hours. If I had to apply for a job, I would be in trouble. I had a brain scan about 6 months ago when it first started but it was normal. Are there any test that can show this type of issue? I am feeling really hopeless.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Feb 6, 2023

@loross
You are right- most doctors don’t understand brain fog. The last few years I have experienced significant brain fog when my autoimmune illness acted up.
Do you get any treatment for your MCTD?

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TSB | @terrirussell | Feb 7, 2023

I had/have, Mast Cell Activation Syndrome……all of the same symptoms as you…….all of them……one of the things that helped w the fog ……no I have to say, cured the fog…….was NASACROM spray. Only available on Amazon. I use that every day and the brain wakens……on the bizarre skin rashes I put some of it together with baking soda and plaster the rash. It clears it right up. I can’t be without that stuff!……

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apearl27 | @apearl27 | Nov 15, 2023

Wow 😮 I didn’t know this was all part of it even I got Phycosos I’ve slowed down as well I’m tierd and have no fight I also was artistic and the adhd doesn’t help anymore ..it’s rough but reading your post made me feel better ❤️‍🩹 it’s not in my head

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Nov 16, 2023

I have experienced brain fog on and off for 30+ years. Fibromyalgia, chemotherapy.
It was stable and I managed working a high stress job.
My worst experience happened more recently after treatment for GI autoimmune illness with Imuran. When treatment was finished after a few months I felt well finally. Only problem was my brain- thick fog and strange cognitive change. For example- started tennis again which I had played for years. I did not know how to play, to hit the ball etc. Very basic. Driving was different too- especially parking the car. I could not get it straight into a space. With lots of practice and focus I succeeded. Same with tennis- had problem staying focused. Started taking caffein pill before playing and it helped. Now I’m back to normal again. I had problems with finding right words etc. Started with crosswords- every day for a long time. Good for brain exercise.
I don’t know why this happened- little extreme.
Now I’m ok but with lower mental energy. Of course I’m not a spring chicken either…

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Deedee | @deedee4 | Nov 28, 2024

Have you filed for disability? Is that an option ? I have similar issues and diagnosed with MCTD this year. Have worked in Pharma for over 30 years and managing people and struggling with brain fog and making mistakes that I know I shouldn’t be making etc. don’t know how long I can keep it up but can’t quit yet

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gettingscared | @gettingscared | 4 days ago
In reply to @marye2 "I have MCTD and there are times when I am not all there. Coping skills, like..." + (show)
@marye2

I have MCTD and there are times when I am not all there. Coping skills, like lists, setting time for an activity are helpful. I have been on zoloft for 24 years and it helps focus. Consider a sleep study to see if you have apnea, which affects deep sleep. B-12 is helpful, too. Non-processed diet with low sugar content is important as is hydration and keeping up with electrolytes. I worked fulltime until retirement. But - I have to have that daily walk, a plan for the morning's activities and take time for lunch. I am best at home in the mornings. I am pretty attention deficit, but find that EFT tapping, a daily walk/bikeride/water exercise and so on are important. A good book by Thomas Hartmann, Attention Deficit; A Different Perspective was useful. Now and then a Coke or 1/2 caffeine pill helps.

Jump to this post

Thank you this is helpful. I also use lists (but then I don't remember where they are) I put alerts in my phone, I write down appointments in a old-timer calender and in my phone but still I get confused. The brain fog is getting worse. I find sleep is important, and make sure to get 7 hours. I do most of what you do, Marye2. But still, it's getting worse now. I had amazing attention and could do many things at once but now I struggle to do one thing without losing my train of thought. Thank you for the idea of EFT tapping. and the book. I also find that having a cup of coffee focuses my mind for a few hours. I am a writer and I drink coffee right when I sit down so that I will be able to work. I am so happy to find this group!!

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gettingscared | @gettingscared | 4 days ago
In reply to @loross "I am at this very place in my life. I have had so many symptoms since..." + (show)
@loross

I am at this very place in my life. I have had so many symptoms since 2015/16. Rash that the dermatologist said was a possible side effect of spray sunscreen since it happened when I spent time in the sun. Tummy issues, muscle aches in trunk, hands, feet and neck. Heart issues that were undetectable on EEG and ultrasound. I had one doctor suggest I get mental help as he thought I was having a mental crisis. Finally in 2022 I was diagnosed with MCTD. I have had progressive brain fog to the point I can no longer remember words or things I have done. I am a teacher and my students are catching my mispelling. Words come out that I do not intend to say. I was afraid I had Dementia. Turns out it is brain fog. I am seriously worried one day I will forget who I am. My Rhumetologist says no processed food, no coffee, no sweets. I completly changed my diet thinking that I would get rid of the brain fog. It is not helping. I am not myself and have no idea where else to turn. My Dr is no help with this. I have no idea where to turn next. Any ideas or suggestions will be helpful.

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I agree doctors are no help. I asked my rheumi and he said to talk to my neurologist (I have trigeminal neuralgia and also increasing white spots in my brain). My neurologist had no idea either. I cant give up the coffee because I need the caffeine to focus. Im so sorry about the teaching and the issues it is giving you. When I was still working as a senior journalist I was lucky to have a very good friend sitting next to me in the office who helped me find the words I kept losing -- like, you know that think that does x y or z, or the word that means something like ... Sending love.

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marye2 | @marye2 | 3 days ago

Make sure you are staying hydrated, too. I use post it notes, as they stick to the desk or other surface. My mother, years ago, would use stick pins to attach things to her shirt!! Many people also use their phone's reminders for meds, to step away from the computer, etc. Our household uses the phone calendar, also, as we both get "bedazzled." Have you read Thom Hartmann's Attention Deficit: another perspective? It appears to match my attention span: like him, an afternoon Coke helped. This is a constant adaptation to life to be as productive as we all want to be: a friend said she noticed lots of us are A type personalities!

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marye2 | @marye2 | 3 days ago
In reply to @gettingscared "I agree doctors are no help. I asked my rheumi and he said to talk to..." + (show)
@gettingscared

I agree doctors are no help. I asked my rheumi and he said to talk to my neurologist (I have trigeminal neuralgia and also increasing white spots in my brain). My neurologist had no idea either. I cant give up the coffee because I need the caffeine to focus. Im so sorry about the teaching and the issues it is giving you. When I was still working as a senior journalist I was lucky to have a very good friend sitting next to me in the office who helped me find the words I kept losing -- like, you know that think that does x y or z, or the word that means something like ... Sending love.

Jump to this post

I use Word to do spelling checks and look up synonyms to find the right word. It's all about finding other ways to keep going...

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diverdown1 | @diverdown1 | 3 days ago

This sounds like Long COVID, which I have had for over 3 years now. I am going to do some of my own research. Hang in there, all of us.

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