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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@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?

REPLY

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!……

REPLY

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

REPLY

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…

REPLY
Please sign in or register to post a reply.