[Alan]

Brain fog is a standard for me on a daily basis, more just before my next IVIG treatment

[Joe]

Hi Alan. Funny you should mention that.i was just wondering if anyone has had brain fog.i would be doing something and my brain just stops .I have to sit there for a minute then it will come to me.i have ocular mg and seronegative

[paul spychalski]

Yep! you have BF.

[George Kesterson]

Brain fog, it makes what little brain I have left hard to use. Most days in the afternoon, some days worse than others. I can hardly write with a pen/pencil because of the fog and shakes. Signing a document is very difficult. Trying to concentrate and type today is also difficult between the fog and shakes.

[standia]

Hi, I saw your post about brain fog and was wondering if you or anyone else have found any medications that will reduce or eliminate brain fog. Prescription or OTC????

[Jodi]

Managing brain fog related to MG or other conditions can be challenging, but some strategies might help. Regular sleep patterns, hydration, and a balanced diet focusing on vitamins and minerals can significantly contribute to cognitive clarity. Additionally, engaging in mental exercises or activities may help keep your mind sharp.

You could consider cognitive behavioral therapy with a therapist specializing in chronic illness, which can provide strategies to cope with brain fog.

– Jodi, Team Member

[miche]

My memory was affected by MG but became worse after catching Covid 2 months ago. I hope it doesn’t get worse with time.

[Mama]

Yes, I have brain fog and fatigue. Sometimes coffee helps, but no one has suggested medications. It is very frustrating and slows me down considerably. I try and push through, but it is not easy.

[DD]

I’ve tried caffeine but then that causes my anxiety to ramp up. I used to think I was fairly sharp but now a lot of my conversations with people are me searching my brain for the right word I’m trying to say and having trouble articulating my thoughts (that’s if I can get them in order and I don’t slur my words) and people lose patience and stop listening. It’s very frustrating.

[paul spychalski]

Sorry to hear that but I have all those things too!

[S.]

Absolutely! Sometimes it comes on gradually, others-wham! When I have other symptoms like slurred speech and/or balance and foot drop issues, people may think that I am drunk or have had a stroke. On a few occasions over the years, it has been bad enough to forget where I am or how to get to where I am going for a few minutes

Worry/stress makes it worse. If it is very mild brain fog, a short break and a caffeinated soda help. I make sure to keep my blood sugar in balance, as strong dips make fog worse. That means staying away from refined sugar and simple carbs as much as possible.

If fog has progressed too far for a brief sit down and quiet to help, I just take a nap. Sometimes my day just has to stop before it gets started going.

Does MG interfere with my work life, ADL, and social activities? Duh! But, in my case, everything was worse during first two or three years after diagnosis, then has gradually, slowly improved over the past four. Sometimes I wonder how much of my improvement can be attributed to my learning better ways to deal with MG-both physically and emotionally. I gauge how far to push things and try not to overdo it. And I certainly do not worry about other people’s opinions of what they think I can and cannot do. When I get tired, I stop. That may be for 15 minutes, or it may be for a day or more. Other people don’t live in my skin. Seriously, I think learning what I can control and not stressing over what I can’t has helped more than any of the meds I took. Getting into better general health has also played a part. Doing what I can, when I can, and trying not to compare it to what I ‘should’ be able to do is a hard lesson, but makes a major major difference. Best wishes!!!

[Jodi]

Thank you so much for this insightful reflection. Your honesty about the ups and downs and how you’ve learned to listen to your body and let go of expectations is certainly going to help others navigate similar challenges. It’s a reminder that managing MG is about more than just medication. It’s also about mindset, pacing, and self-compassion 🙂 -Jodi, Patient Advocate

[mik]

I get brain fog quite often and the more I have to read the more fatigue I get.

[Alan]

My brain fog is light in the morning, but as the day progresses so does the fog. Some days I will not do anything but rest and try to relax so maybe tomorrow might be better

[Alan]

The only thing I have found to work for me is that I take B12 vitamins ( OTC) and a once a month B12 shot ( prescription) it seems to reduce the severity of my ” brain fog” I hope it might work for others

[Alan]

B12 in either form also gives a energy boost, sometime more than expected!

[Mark Cox]

I’m a 65 year old male experiencing more brain fog each year as I’m going into my fourth year of full blown gMG. Without my infusion, I have all the gMG symptoms and have also been changing infusion brands. Starting with IVIG, then Vyvgart, currently on ULTOMIRIS and trying to get Blue Cross to approve Vyvgart Hytrulo for the past 3 months with no avail yet…?

I have experienced more brain fog starting in the second year of being diagnosed and more in the last nine months that seems to be bringing on moods swings that I’ve never experienced before and part of the reason I’m changing my infusion brand again among other side effects… It’s come to the point of challenging my older age or feeling the fear of Alzheimer’s coming on primarily because of the recent mood swings combined with the brain fog but after being checked out by my neurologist, he says it’s just part gMG and the different infusion brands shouldn’t have much or anything to do with my brain fog.

Since, I’ve been trying to manage it on my own by taking notes on diet, sleep, work/life events etc. and finding stress is one of the main culprits for me along with lack of proper rest as I’m still working in a high stress job with out of town traveling twice a month… When traveling through the airports, motels, client meetings and don’t eat right or get proper sleep in motel beds, I can feel my body and mind draining quickly and triggering on additional brain fog making my traveling and client visits even more challenging…

The lack of sleep is definitely a large contributor to my brain fog despite the stress at work…

Like others, I’m learning that eating healthier is helpful, light exercise, plenty of rest including naps are very helpful for mind clarity… Coffee seems to help but caffeine sodas are short term fixes for energy and brain fog. Candy, bakery, Ice cream seem to pull me down which also brings on brain fog… When my body and mind feels down, brain fog seems to show up more often…

I’ve tried OTC vitamins and meds for brain fog but they are very expensive and not sure if they worked or not as I feel I’m getting better results with Plenty of rest, healthy dieting, light exercise and avoiding the stress fires at work and home… But like most. There are embarrassing days that I can’t remember my co-worker or grand kids names and other days of momentarily short bursts of brilliance that can’t explain…?

At the end of the day I’m really glad you brought up the Topic of “Brain Fog” as I think it’s highly overlooked and an under diagnosed symptom of Myasthenia Gravis and should be considered as one of the many gMG Symptoms and side affects so it can be addressed on the medical front…

[paul spychalski]

I have a lot of brain fog! Forget whet day it is and what I’m supposed to do. It’s getting worse, a lot worse. As far as sleep I take Trazadon and Melatonin, thats the best part of my day. I’m 79.

Good luck

[Jodi]

Thank you for sharing your experience with brain fog and its impact on your daily life, especially with the added pressures of traveling and maintaining a high-stress job. It’s promising to hear that you’re finding some relief through healthier lifestyle choices and self-awareness regarding stress management.

I hope you continue to find more effective strategies for managing your symptoms.

-Jodi, Patient Advocate

[DD]

Yes! Since my diagnosis in 2017, I’ve never had a neurologist prepare me for many of the symptoms, but especially not brain fog. I thought it was just me and that I was losing it until I saw some others talk about it. But, still, I don’t feel like it’s recognized enough or even mentioned much in the medical articles I’ve read.

And the really sad part about that is that it’s had a huge effect on my life and my mental state and my emotions in dealing with brain fog. But yet I don’t feel like it gets the attention it deserves as a symptom of MG

[waynecis-42]

Hi all, I started having brain fog and physical fatigue about 3 years before I was diagnosed with gMG. Since I was diagnosed last year I’ve learned that brain fog and physical fatigue are related. I also learned to stop fighting and lay and rest. The good thing is that work from home.

Good luck

[Alan]

Brain fog and fatigue definitely go hand in hand together… And stress has a big contribution to symptoms. I am on IVIG , every 14 days, and mestinon, for treatments that don’t seem to work as well as they used to.

[Jodi]

So many in our community can relate to the frustrating cycle of fatigue, brain fog, and stress making everything harder. It’s tough when treatments stop being as effective, but your honesty helps others feel less alone in that struggle. Sending good thoughts your way! -Jodi, Patient Advocate

[waynecis-42]

Hi Jodi, I have brain fog everyday. And like you I’m still working. However, I’m lucky because I work for myself at home.

My problem is when it hits, the only way that it goes away is for me to take a nap. The problems is my customers keep asking when they will get the finished work. Brain fog has clearly made my job much harder.

[DD]

Exactly. I’ll be scheduled for a meeting that I really can’t miss unless I’m extremely ill. I can’t exactly take time off from work or miss a meeting or miss a deadline just because I’m having “some brain fog” and need to rest. But, then I’m in the meeting while having brain fog and can’t really keep up or concentrate or think of the words I’m trying to say. It’s almost impossible to stay on top of everything and not feel like I’m dropping the ball somewhere or not doing my share of stuff. It’s very frustrating. Just telling my boss that I need to miss a meeting or deadline in order to rest doesn’t feel very professional or sufficient, even though they have been very accommodating and understanding of MG.

[Jodi]

I relate to that. It’s so hard trying to push through brain fog while working, especially with the pressure of deadlines. I’m glad you can work from home, but that doesn’t make it any less frustrating, as you know all too well. You’re doing your best, and that’s something to be proud of. -Jodi, Patient Advocate

[Robert Studebaker]

You know, I know exactly what you mean, and if you google the “medical definition of brain fog”, it describes my symptoms perfectly. However I suggest you be careful and use the more specific symptoms before you say “brain fog” to your neurologist. I told mine right off the bat “brain fog” and he immediately went off that BF was not caused by MG and he started looking for other things that may cause BF such as lack of sleep and sleep apnea. And my guy specializes in MG! To a neuro, BF is associated with other neurological issues. So when I went into detail about the symptoms, I think I convinced him, I just used the wrong terminology off the bat.

My BF always hits me in the afternoon and is really bad after In have worked several hours at my desk. FYI, I take a daily injection of Zilbrysq in the morning, early. I also take 120mg of Mestinon three times daily. The only think that relieves my BF is to go lay down for a couple of hours and sometimes I fall asleep. When I wake up however, I’m good for a few more hours until bedtime. Good luck to you.

[Jodi]

It’s true that how we describe symptoms can change how doctors respond. And as you touched on, many doctors do not associate symptoms other than the characteristic ones as being linked to MG. Glad to hear rest gives you some relief. Sending good thoughts your way! -Jodi, Patient Advocate

[paul spychalski]

Yes. I’m 79 and it’s getting worse. I’m having trouble friends names, my grandchildren also. You have to just deal with it somehow.

[Jodi]

I’m really sorry you’re going through this. It’s so hard when symptoms start affecting things like memory and relationships. You’re right, sometimes all you can do is take it one day at a time. Just know you’re not alone in this struggle, and I’m sure your loved ones are understanding. -Jodi, Patient Advocate

[paul spychalski]

Yep.

[Junker]

Even after two years suffering from MG I am still wondering if I a m still wondering if I am affected by brain fog. Doctors would say no, but as a matte of fact I have serious problems to concentrate. Used to be a pasionate reader. Haven´t been able, however, to read a single book throughout the last two years.