[paul spychalski]

Ya. You start telling a friend about something and POOF! You can’t remember what you were going to say. PLUS ALL THE OTHER THINGS THAT ARE MENTIONED IN THE FORUMS..

[James Starkey]

Yes, I suffer from brain fog often. It is highly correlated with serious fatigue, which arises from a long list of causes. It reliably appears between 4 & 5 p.m. or after any exertion, even something as simple & low stress as a 1 or 2 hour visit from a friend. I haven’t found any silver bullets to deal with the associated forgetfulness except to take a long nap or go to bed. If the general stress level is low and there are no complicating factors, e.g., an infection of some sort, I usually recover overnight. Since my MG treatment has become ineffective I hope the med will reduce all symptoms. Fatigue, brain fog, and losing my balance are the most debilitating symptoms I have.

[Jodi]

You described your pattern of brain fog and fatigue so insightfully. How it tends to be heightened after exertion or later in the afternoon is something many people with MG can relate to. It’s a good reminder that even small amounts of activity can be draining when energy levels are already low. I hope your current treatment brings some relief soon. It sounds like you’ve learned how to listen to your body and rest when you need to, which isn’t always easy to do. Keep doing what’s in your control -Jodi, Patient Advocate

[miche]

My memory has gotten worse since having MG 18 months ago. I’m afraid MG is the cause because acetylcholine, essential to brain memory, is block at the acetylcholine receptor. I supplement with an acetylcholone supplement, Huperzine A, but it’s a constant battle as I am 85. Mestinon will help if you tolerate it. Fifty percent of MG patients are supposed to have memory problems, yet my neuro didn’t know about it! Hope I didn’t depress anyone.

[John]

Ive recently had this since July, just like it says on the tin, Brain Fog, cannot concentrate. Got Covid overseas in July, plus losing my wife due to heart failure which has brought on severe stress and now Peripheral Neuropathy. Very fatigued, tingling in feet and hands and difficulty with sleeping so take Zolpidem which actually interferes with good sleep, particularly deep sleep and when I get up in the morning, staggering about and very weak with muscle loss, bad headaches and now have no idea how much this relates to MG. Certainly noticed though increased drooping of one eyelid. Oh Boy. Sorry this wasnt meant to be a rant and actually tmi but actually wanted to know how many of you have MG and then started to have neuropathy issues and is this related to MG somehow? My neurologist says no, but im not so sure. Trying out acupuncture. Albeit not a great holistic believer, but willing to give this a go for a while.

A right mess at present. Will also start a new thread as sometimes tends to get lost, so sorry for the double post.

[Jodi]

I’m so sorry for all that you’ve been facing, especially for the loss of your wife. Grief, stress, and recovery from illness can deeply affect how our bodies respond, and it’s understandable that everything feels compounded right now.

While we can’t offer medical advice, you might find some shared experiences helpful.

Mention of peripheral neuropathy: https://myastheniagravisnews.com/forums/forums/topic/agent-orange-exposure-and-mg/page/2/#post-22364

The forums and columns are safe spaces to connect with others who understand the ups and downs of MG, especially when life feels overwhelming. I hope some of what you find offers comfort and reassurance as you continue sorting through what’s going on. -Jodi, Patient Advocate

[Jodi]

It’s understandable to wonder how much of it is connected to acetylcholine, especially considering all the research you’ve done. Thank you for sharing your perspective and experience so openly. Balancing treatments, supplements, and daily life at 85 is no small feat, and your insight adds a lot to the discussion. -Jodi, Patient Advocate

[John]

Thank you, Jodi, appreciate it.