Hello, everyone. I have been experiencing moderate "brain fog" and memory loss the last few months. I recently forgot my dog's name, and I have been having a lot of trouble remembering procedures and protocols for my laboratory experiments... which is very bad, since my job depends on keeping my wits about me. I know many others have mentioned brain fog as a secondary symptom, and I was hoping to go into more depth to see when it strikes, and how severe it is for each person. All of the other symptoms I can deal with, but being unable to remember anything kinda defeats the purpose of going to school for 3 more years of PhD work.

Hi Alex, Just read your 'brain fog' post ... how frustrating especially considering how young you are! For years I've been blaming mine on fibromyalgia and now my age (56) and now I have LGL to add to the list. I'm not currently taking any medication so it's not a side effect of that. I recently forgot the names of a couple of acquaintences and it took me days to remember! The 'fogginess' is not constant all day, every day but strikes at inopportune moments and truly makes me feel like a 'dummy'. The forgetfulness/fogginess I have now is different than what I've been experiencing over the years with fibromyalgia. It's happening more often with simple things. Sometimes I can't complete a sentence because my brain 'skips' and I can't think of the correct word. I'll try to pay attention to when this happens most frequently. I do have lists all over the house, in my car and in my purse - if I can just remember to look at them LOL ...

I agree there is definitely an effect on the mental prowess with this disease. It frightens me how much I can forget and how much harder I have to study to remember subjects. I have also found blocks of time missing from my childhood, I just don't remember events that happened. I had to rely on a friend's wife to remind me of her own name! Yuck!

my husband definitely suffers from brain fog to different degrees, not sure what (stress? lack of sleep? meds?) contributes most. would be interesting to consider. At it's best, he still feels like he can't multitask the way he used to. At it's worst, he has trouble speaking clearly and can't come up with the words/sentences to say what he wants to. brain fog is well known within other types of cancers, so it's not surprising that it is an issues in LGL as well. I saw an article in a newsletter recently related to it: http://www.cancercompass.com/cancer-news/article/34399.htm?c=NL20101006 a google search on cancer and brain fog pulled up lots of interesting mentions, but most were blogs and forums rather than official articles. this one may be selling something, but sure mentions a lot of familiar bits: http://cancerspot.org/2008/11/11/got-brain-fog-then-read-this/

I complained to my dr about this-I am on mtx-and he said it was the meds. He also said that how bad it is varies from one person to the next. I have better days than others. I have a listed posted on the door of all the things I need to have before I leave for work. LOL! It is an adjustment but I have learned that if I don't laugh I cry. I also sat my family down and explained what was going on so if I forgot a birthday or event it was not personal. That took some of the pressure off! I hope that you are able to find some tools that work for you-like I said before I have become a list person with lists everywhere but it seems to be working!

i thought i was losing my mind, thank god there are others having this as well. i have had the hardest time remembering people from my past and like movies and actors and actresses. At first i thought it was because i have been off of work for a while, but after thinking about it i remember talking to my boss last year forgetting many conversations we had. My wife and I were just talking about it and she remembers a ton of days where she thought i had lost my mind. I wonder if it will get any better?

I'm glad I'm not alone in this symptom. The pain and discomfort I can deal with... but not remembering is embarrassing. It is also a big problem at work where I need to be mentally on my toes at all times. Has anyone done anything to improve their concentration/memory as a result of this illness/medication?

to be honest, i have been on off of work since feb 2010 and almost wonder if i could go back to work with my memory and fogginess....i could never go back to the position i was at since i had 30 people reporting to me and i dont think i could manage that many people and keep a sane mind.

Hi. This is all very interesting to read. I've found over the last 6 months i've been forgetting words. I really concentrate and will finally remember. To cover up i think of a smaller word. I'm studying at the moment and this year has been a challenge. Could be LGL, could be stress. I'm 39. Diagnoised yesterday with LGL. I've been finding the demands of my job more distressing. I want to work less hours so I can recover from the mental fatigue. Does anyone else feel the same?

Yes, me too. Sometimes I forget what I was saying mid sentence. I don't work anymore, so that is not a problem. I just look like a ditz to everyone. Comes and goes, some days I just can't come up with the words and almost studder. I also have Hypothyroidism and that could cause the same.

I've got it too. The worst has been a few episodes of very poor facial recognition for people that I had recently met -- once I think I faked it like a "flake" so to say, the other worst time I asked a woman if she had children (at my husbands holiday work party) when she and her daughter had been at my home the weekend before! Otherwise it comes and goes in general, I blame the anemia, fatigue, chemo brain, motherhood and just poor organizational skills. But, I know I wasn't like this during my peak years. I actually did quit my job after I got married at age 36 to "rediscover myself," but really it was because of some sort of mental fatigue. I just couldn't handle the multi-tasking.

Hi Susi235, I completely relate to that. I worry I offend people when I don't remember who they are or their names. I have to laugh at myself on this one - last week I had lunch with a girl i could not remember who she was. I knew her face really really well. I was queing for a sandwich at a cafe (feeling extremely fatigued and stressed just wanting time to myself). And she says "Hi Jo how are you?". She joined me for lunch, she chatted lots (thank goodness) and I could not for the life of me remember her name. She knew i had recently moved house. I asked her strategic questions to try guess her name. After an hour she said her name....and you know who she was? My solicitor! who acted on my house purchase, family trust and will! haha - major brain fog there! I will never forget her name again! :-)

Mental fatigue is an issue for me too-mistakes I use to never make before at work happen. I am currently enrolled in some online classes which have been a huge struggle! I have found that writing stuff done, keeping my blood sugar up, and taking naps have helped. It is frustrating but I have been honest with the people around me and have asked them not to take it personally...

I have the forgetfullness as well. At first I thought it was just old age. But when my husband started noticing I realized there was another problem/symptom with my LGL. This disease needs to be research so much more. I find more and more people are getting it and it appears no one is researching it. How do we get the scientists and doctors to listen to us, so they can find a treatment and a cure? It's so frustrating for me.

Hi Jesus Lives, The somewhat good news is that there is research going on in Hershey, Pa. at Penn State Hershey Cancer Institute under Dr. Thomas Loughran. I had my first appt. with him last Tuesday. It went very well. He spent a good amount of time talking with my husband and myself about LGL. He did more blood tests to comfirm LGL, which I've learned since that it is. Of course, I totally forgot to ask about the brain fog but will try to remember (lol) at my next appt. I will also be in the Registry for research for LGL. Dr. Loughran is the Dr. to see if you can get to see him. Getting back to the brain fog-every day now sometimes a few times a day-I go into a room and can't remember why I've gone there. Post it notes are taking over my world. LindaW

Can I ask everyone who's commented on the brain fog/memory loss: has everyone been on MTX who's experienced this memory loss or has it just been a side effect of the LGL itself? My mom is on MTX and has increasing issues with forgetfulness. wondering if it's the MTX or the disease itself? thanks!

My husband has experienced intermittent brain fog and memory loss. When he was taking MTX we assumed that was the cause, but he stopped taking it many months ago and was having trouble with it again recently. Specifically he has had trouble recalling the names of people he knows, coming up with words, and recalling what happened in a meeting accurately. One day he was late coming home from the gym because he couldn't remember his locker combination! And then it mysteriously gets better again. -Deirdre

My brain fog was before methotrexate. Currently it is better, but my disease is better too.