Hi Tom, I just read the article by Susan McDermott on Brain Fog and had to thank you. It explains many of my symptoms and answers a lot of questions for me. I am seeing my Rhuemy tomorrow and now have many questions for him. I have had 4 episodes of meningitis back to back and never got any answers as to why this could have happened to me, now I think it could have been related to my SS. I also have disc problems in my lower back and am wondering if this could be caused by my ss as well. I am going to give this article to my Dr to read and see what he thinks, I am sure he will find it very interesting too. Thanks again. Patty

I came across a supp called Phosphatidyl Choline. There are some brands out there that have tons of added vitimins and anitoxidants and they are pricey. By itself it is a purified form of lecithin. Supposed to be good for memory loss. (Also good for cholesterol.)

I write lists then misplace or forget the list! I loss words, I can remember the letter they start with and will remember the whole word a few minutes later. Very scary

WOW!
My cognitive has sOOOooooo declined as well in the last 2 years. I suppose sjogrens is a contributating factor, and hormones in general. menopause or not lol...I do believe mine has slightly increase lately since I started taking Fish oil (DHA) Nordic brand. DHEA , and progesterone ..I think plaquenil helps too for some reason. I get so spacey, i can literally walk in circles at times.Sleep helps *alot* too, but who can sleep ?.?.

Thanks to all of you. I just joined & forgive me if I miss spell & I am also dyslexic. I have been feeling all alone my family doesn't talk about it. So there is no one to understand what I am going through. You guys made me laugh when I was in the middle of crying; at least I know that I am not alone. As for the brain fog...my twins think it's funny when I tell them to remind me to do what I need to do when we get to where we are going. As soon as I tell them to remind me the wait for me to finish talking & then they tell me mom you have to this when we get there. I always tell them it doesn't help me if you tell me right after I tell you. You have to tell me when we get there.

Anyone found a benefit from Ginko Biloba? I do have brain fog in which I feel spacey, and my short term memory I think is affected slightly. But I am also training to be an MT (Medical Transcriptionist) and can remember how to spell tons of medical words, which would be hard to do healthy. So I don't think the brain fog is severe as it seems. Before I thought the brain fog would hinder my abilities alot more but its not too bad. I think the fatigue alone makes you feel spacey and less able to function mentally.

Fatigue is definately the major factor in brain fog. We tire so easily and fast it can really create a problem.
I started napping and along with plaquenil it seems to have subsided for the most part. I still get some when tired though. We lose our ability to focus in on things we normally take for granted and its frustrating as it gets!

I read a ton and also write a ton so this has kept me fairly sharp also age plays into it and how long you've had SjS.

It can be overwhelming when you first get it. Some people get it really bad I know I did. I almost had to look at my license at times. :-)

"One lady says, "You know, I'm getting really forgetful. This morning, I was standing at the top of the stairs, and I couldn't remember whether I had just come up or was about to go down."

The second lady says, "You think that's bad? The other day, I was sitting on the edge of my bed, and I couldn't remember whether I was going to sleep or had just woken up!"

The third lady smiles smugly. "Well, my memory is just as good as it's always been, knock on wood," she says as she raps on the table. Then with a startled look on her face, she asks, "Who's there?"

Tom, I have heard that joke and love it. I feel that way sometimes myself. I don't think I have ever seen as many responses to a thread as this one has generated. There has been so much information shared. But this is one of the things the docs recognize the least.

I can relate to all of you! I get lost taking my daughter to school and that is literally around the corner. All I have to remember is to turn left, and 3 years later I still can't get it right!... I feel so stupid so often that I get angry at myself. I tell people things like `There are bears in Australia' and I should know better than that, I live in the country! I am now making a conscious effort to lighten up on myself and laugh at the crazy things I say and do. I can't seem to beat brain fog... Seems more like brain block to me!

I have so enjoyed reading all your comments!! I am an RN in aged care & work with a person who has Lupus so sometimes we have to finish each others sentences & there is a lot of waving of hands & saying " What was I saying?"
Oen of the most worrying things for me was not being able to flush the toilet! I was with a resident & was frantcally looking around to try & work out what to do! Iasked the resident "How do you flush your toilet?" I can still see the look on her face& she was the one with dementia!!!

It suddenly came to me how to do it & I have never felt so stupid in all my life. After reading all your comments I feel better!

I write down on my parking ticket where I am parked as I have lost my car so many times!
Sometimes my words come out wrong as well. Mt mother had dementia so it is a bit of a worry!!

I also have brain fog and am very frustrated by it.I have to take my time when I speak because I usually forget my words. My adult kids seem to have no patience with me because they usually have to wait for the answers to questions. I feel so stupid. What is the answer? I have spoken to my endo because I do have hypothyroid and lupus, she hasn't given me any real answers. There has to be some kind of help.
If anyone has one please let me know.

I guess we all treat this one the same way we are advised to treat most of our symptoms. Hydrate, rest, exercise, eat right and avoid stress. I do notice it is worse when I am tired, stressed or sick.

Vitamin B12 sublingual for memory loss helps me a lot.

Brain fog here too. Its frustrating to struggle for a word or thought when talking to someone and they get "the look". I forget doc names, etc. Little notebook with appts., lists, numbers, etc. always with me now. Family isn't helpful sometimes as they want me to hurry up and say whatever I am saying and I can't. Most of the time I just stop and quit talking because I don't like being made to feel stupid when I know I am not and also anger is not going to help the situation.

Tom,
I certainly relate to the monster called "Brain Fog"....yeesh....I was a preschool teacher for six years. During the last year of my teaching I was dx with SS....this was last year by the way....Well, my brain fog got so severe that I would look into the faces of my precious students, that I had been with for six to eight hours a day, all year long and not be able to tell you all of their names. It really scared me, and embarrassed me in front of my own self.....this is definitely a "humbling" disease.....this is my first time on this site and I'm so thankful to have all of you.