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Severe brain fog with possible MCTD
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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Yes I have a hard time believing that it can be just ‘gone’ now. I truely believe that I’ve always had mctd and it’s been worse at some times more than others. This is what contributed to the BII as women with history of autoimmune disorders do worse : get sicker over time. There also may be the long covid illness factor as well! I am out on company STD rn so need a good team of doctors to be able to help figure this out and so I can hopefully feel better someday
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1 ReactionThis describes me to a T. It started 7 years ago. I was given a cognitive test because i thought i was losing my memory. I started to merge words or not being able to say words that i was thinking. I had to write sentences down and sometimes paragraphs, because with out seeing the words, i would lose my train of thought in the middle of the sentence. Sometimes the things I say, doesn't make sense to people nor myself. So I end up repeating myself and saying it slowly. This is so frustrating that at times I want to cry because I feel like it's only a matter of time until I lose my mind next and not be able to think of express myself. I use ChatGPT for everything now because I am afraid that I will type something that makes no sense. Especially, being that I am in leadership position. Is there something out there that can help me?
@shelleyas I had hoped to print an article on brain fog for you, but the magazine wouldn’t let me! Dang! You can probably find it at your library. It’s the May 2025 issue of National Geographic. “What Exactly is Brain Fog? Here’s What Scientist Are Finding Out.” I know, NatGeo always focuses on the natural world and foreign cultures, but they are branching out.
I hope you can find it! Be sure to let me know!
To Shellyas; Deedee; jayrob624;
Brain Fog is real, you are not imagining it, and yes, it makes you feel as though you are losing your mind, memory, and cognitive abilities.
My understanding according to my dr is the above symptoms are part of an autoimmune disease where your immune system causes a temporary inflammation to the brain that temporarily blocks or makes it difficult for your brain and body to process information and/or communicate effectively.
At my repeated pleadings for help, my one dr finally referred me to a neuro dr who offered me no help at all since previous meds unsuccessful and such a disappointment. Wish I could offer hope of a solution…only the peace of knowing you are not suffering alone.