Severe brain fog with possible MCTD

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!

Hi everyone. I have MCTD, diagnosed with RA in 2003 and MCTD in 2005, and I’m 41 years old now. After reading through your posts, I feel a sense of relief knowing I’m not alone in navigating the challenges of this condition.

One of the struggles I’ve been dealing with for years is brain fog. I’ve brought it up to my rheumatologists multiple times before, but none of them ever linked it to my condition. And honestly, none of them even paid much attention to it. It’s been difficult to explain. I often lose focus during conversations, forget everyday tasks, and sometimes I even forget the names of things I use regularly. For example, forgetting my PINs has become a frequent issue. I’ve had to go to the bank multiple times for PIN resets because I simply can’t remember them, even though I’ve just used them minutes before. This has been both frustrating and exhausting.

Another challenge is low comprehension, especially when trying to follow complex conversations or instructions. Sometimes, I feel like I’m hearing the words but can’t fully grasp their meaning, leaving me feeling lost and disconnected. I also get lost in conversations, like in the middle of talking to someone, I just zap out and then come back, completely lost on where we left off or what was being said. It's as though I’ve missed chunks of the conversation entirely.

More recently, I had two falls within just four days of each other, both of which resulted in injuries and required anti-tetanus shots. Around the same time, I also experienced another instance of forgetfulness when I couldn’t recall my phone PIN, despite using it only moments earlier. A few days later, I forgot my ATM PIN too, even though I’d used it just days before. It feels like these lapses are happening more frequently, and it’s scary.

Driving has become another concern. Sometimes, it feels like I’m driving on autopilot, only fully becoming aware when something urgent happens — like a horn honking or a pedestrian crossing. It’s unsettling, and it’s making me nervous about driving.

Finally, I shared all of these concerns with my current rheumatologist, and for the first time, a doctor considered that there could be a neurological issue. He referred me to a neurologist, which was honestly an emotional moment for me — realizing that my struggles weren’t just in my head. It’s validating to know I’m not imagining these issues.

I’ve also noticed that I often struggle to find the right words in conversations. It’s left me feeling isolated, and sometimes I feel like no one around me truly understands what I’m going through.

I have an appointment with the neurologist this week, and I’m really hopeful that I’ll finally get the support and answers I need.

Thank you so much for reading and for creating a space where people genuinely try to understand.

Hi everyone. I have MCTD, diagnosed with RA in 2003 and MCTD in 2005, and I’m 41 years old now. After reading through your posts, I feel a sense of relief knowing I’m not alone in navigating the challenges of this condition.

One of the struggles I’ve been dealing with for years is brain fog. I’ve brought it up to my rheumatologists multiple times before, but none of them ever linked it to my condition. And honestly, none of them even paid much attention to it. It’s been difficult to explain. I often lose focus during conversations, forget everyday tasks, and sometimes I even forget the names of things I use regularly. For example, forgetting my PINs has become a frequent issue. I’ve had to go to the bank multiple times for PIN resets because I simply can’t remember them, even though I’ve just used them minutes before. This has been both frustrating and exhausting.

Another challenge is low comprehension, especially when trying to follow complex conversations or instructions. Sometimes, I feel like I’m hearing the words but can’t fully grasp their meaning, leaving me feeling lost and disconnected. I also get lost in conversations, like in the middle of talking to someone, I just zap out and then come back, completely lost on where we left off or what was being said. It's as though I’ve missed chunks of the conversation entirely.

More recently, I had two falls within just four days of each other, both of which resulted in injuries and required anti-tetanus shots. Around the same time, I also experienced another instance of forgetfulness when I couldn’t recall my phone PIN, despite using it only moments earlier. A few days later, I forgot my ATM PIN too, even though I’d used it just days before. It feels like these lapses are happening more frequently, and it’s scary.

Driving has become another concern. Sometimes, it feels like I’m driving on autopilot, only fully becoming aware when something urgent happens — like a horn honking or a pedestrian crossing. It’s unsettling, and it’s making me nervous about driving.

Finally, I shared all of these concerns with my current rheumatologist, and for the first time, a doctor considered that there could be a neurological issue. He referred me to a neurologist, which was honestly an emotional moment for me — realizing that my struggles weren’t just in my head. It’s validating to know I’m not imagining these issues.

I’ve also noticed that I often struggle to find the right words in conversations. It’s left me feeling isolated, and sometimes I feel like no one around me truly understands what I’m going through.

I have an appointment with the neurologist this week, and I’m really hopeful that I’ll finally get the support and answers I need.

Thank you so much for reading and for creating a space where people genuinely try to understand.

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.

Hi everyone. I have MCTD, diagnosed with RA in 2003 and MCTD in 2005, and I’m 41 years old now. After reading through your posts, I feel a sense of relief knowing I’m not alone in navigating the challenges of this condition.

One of the struggles I’ve been dealing with for years is brain fog. I’ve brought it up to my rheumatologists multiple times before, but none of them ever linked it to my condition. And honestly, none of them even paid much attention to it. It’s been difficult to explain. I often lose focus during conversations, forget everyday tasks, and sometimes I even forget the names of things I use regularly. For example, forgetting my PINs has become a frequent issue. I’ve had to go to the bank multiple times for PIN resets because I simply can’t remember them, even though I’ve just used them minutes before. This has been both frustrating and exhausting.

Another challenge is low comprehension, especially when trying to follow complex conversations or instructions. Sometimes, I feel like I’m hearing the words but can’t fully grasp their meaning, leaving me feeling lost and disconnected. I also get lost in conversations, like in the middle of talking to someone, I just zap out and then come back, completely lost on where we left off or what was being said. It's as though I’ve missed chunks of the conversation entirely.

More recently, I had two falls within just four days of each other, both of which resulted in injuries and required anti-tetanus shots. Around the same time, I also experienced another instance of forgetfulness when I couldn’t recall my phone PIN, despite using it only moments earlier. A few days later, I forgot my ATM PIN too, even though I’d used it just days before. It feels like these lapses are happening more frequently, and it’s scary.

Driving has become another concern. Sometimes, it feels like I’m driving on autopilot, only fully becoming aware when something urgent happens — like a horn honking or a pedestrian crossing. It’s unsettling, and it’s making me nervous about driving.

Finally, I shared all of these concerns with my current rheumatologist, and for the first time, a doctor considered that there could be a neurological issue. He referred me to a neurologist, which was honestly an emotional moment for me — realizing that my struggles weren’t just in my head. It’s validating to know I’m not imagining these issues.

I’ve also noticed that I often struggle to find the right words in conversations. It’s left me feeling isolated, and sometimes I feel like no one around me truly understands what I’m going through.

I have an appointment with the neurologist this week, and I’m really hopeful that I’ll finally get the support and answers I need.

Thank you so much for reading and for creating a space where people genuinely try to understand.

My spouse has a neurological disorder (Parkinson's) and many of the things you describe are related to this disease. I am not suggesting that is what you have in any way, I am mentioning it to say that your symptoms do sound like they could be neurological in origin. Sometimes something simple like a B12 deficiency can cause brain fog as well. Were the falls caused by a problem with balance, or more from tripping caused by foot dropping?

I was diagnosed with mctd Sept of 2024 and they prescribed hydroxychloroquine which really didn’t help. I went to get a second opinion in May this year and that rheumatologist retested labs and she didn’t think I had mctd and I haven’t been able to get in to see and talk to her again about this and why I would have it and then 8 months later not have it as my brain fog : fatigue remain. Any suggestions? Try another rheumatologist??

I had moments like you’re describing after I had the Covid virus. I now have Long Covid and that part of it has gotten considerably better, but I still suffer from loss of taste and smell and if I overextend myself, body tremors. It’s good that you have an appointment with a neurologist and hoping whatever he/she finds, it can be repaired. Best of luck!