Severe brain fog with possible MCTD

Posted by shelleyas @shelleyas, Mar 29 2:54pm

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.

@shelleyas Hi and welcome to MayoClinicConnect, where we all share our health journey and what worked and what didn’t. Your story sounds so much like mine! Many of the same symptoms and losing my creative side. I, too, had brain fog, which eventually went away. I still get very fatigued. I have an AD in my brain which leaves lesions. I’m sort of in remission now.
I kept a journal every day of what I could and could not do, how I felt, and the degree of brain fog I had. It helped so I didn’t have to remember everything! I’m going to look for other members who also have MCTD and see if they can help.

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@becsbuddy

@shelleyas Hi and welcome to MayoClinicConnect, where we all share our health journey and what worked and what didn’t. Your story sounds so much like mine! Many of the same symptoms and losing my creative side. I, too, had brain fog, which eventually went away. I still get very fatigued. I have an AD in my brain which leaves lesions. I’m sort of in remission now.
I kept a journal every day of what I could and could not do, how I felt, and the degree of brain fog I had. It helped so I didn’t have to remember everything! I’m going to look for other members who also have MCTD and see if they can help.

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I haven’t thought about keeping a journal but I like the idea. It would at least help keep track so I can review with the doctor. Thanks for replying.

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@shelleyas, I add my welcome. You may wish to also connect with other members talking about mixed connective tissue disorder (MCTD) in these relevant discussions:
– How do you cope with Mixed Connective Tissue Disease? https://connect.mayoclinic.org/discussion/mctd-265a2b/
– MCTD (Mixed Connective Tissue Disease) https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/
– Possible MCTD and Vasculitis https://connect.mayoclinic.org/discussion/possible-mctd-and-vasculitis/

Brain fog is a symptom shared by many (all?) autoimmune conditions. My mom has Sjrogren's and likely as yet other undiagnosed autoimmune disease(s) and she, too, lives with fatigue and brain fog. It's a fatigue that isn't remedied by sleep and can severely affect her cognitive abilities. I can see it right away when she is affected. It's not constant for her, but when it hits, she glazes over and really struggles to put thoughts together. She's retired and can put off whatever she was doing until later. But it's exceedingly frustrating to be beholden to it. Like, @becsbuddy, she keeps a journal as we're hoping to find patterns that will lead to a more specific diagnosis and hopefully a remedy or strategy to deal with it.

Shelley, is the brain fog constant for you? Or do you have good periods mixed with foggy periods?

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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 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.

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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.

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shellyeyas, Everything that has been posted here are all different ways we have all learned to cope with whatever we all have.
I've had it for almost three years now. As with many of us my family won't support what I have. Sometimes I'm Lucky I don't live with them. Other times I need help! I have been blessed with friend that have come forward to help!
I'm selling our house I built 26 years ago to move up closer to them to me close to my 9 year old grandson. They've offered no help, but friends have come to help.
I did have a talk with my PCP a few weeks ago.
He said, Lyme, Fibromyalgia, and Chronic fatigue can all fall under the same blanket of Symptoms! The one thing that has set me apart with Lyme is one symptom that doesn't show up with the other two is the Teeth Ache.
There is a book I just finished called "CHRONIC" by Dr. Steven Phillips and Dana Parish. They call what we all are suffering from "LYME+"
The book is very interesting.
The one thing that I have started is Journaling as Becky recommends! It helps me understand what brings on certain things like fatigue, headaches, dizziness, brain fog and other symptoms or what I refer to as my "Episodes"!
My thoughts, prayers and blessings to everyone who suffer many of our same symptoms.
From the Land of Enchantment!

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@shelleyas

I haven’t thought about keeping a journal but I like the idea. It would at least help keep track so I can review with the doctor. Thanks for replying.

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Hi, @shelleyas Have you been able to start a journal yet?
Also, if you are a walker or do indoor exercising, you might want to join our walking group. The link is below.
https://connect.mayoclinic.org/discussion/lets-go-walking-join-me-for-a-virtual-walking-support-group/
We walk in all different locales and weather and we have fun. Sometimes we get carried away with gardening or cooking or pets, but we keep up the walking. Come join is!

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Has anyone mentioned Lyme disease

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@marilyncarkner

Has anyone mentioned Lyme disease

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@marrilyncarkner, Yes I have in my post about two up! I've had it for almost three years. Has totally changed my life! For what reason, I don't know!
Sundance

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