Sjogrens World Forums

I made an appointment with a Neurologist for this coming Wed. My Rheumatologist dismisses my brain fog. Can a neurologist treat it? My work is very important and it scares the crap out of me. I will redo test and second guess myself because I can't remember five minutes ago. Any suggestions to help? I can't afford to give up my career. I just feel like I'm at the end of my ropes here.

sarajaane,
Brain fog is a part of autoimmunity syndrome and it is getting worse with me. However, I do believe when you have a flare-up it will get worse. You did not say what syndrome you have.
I see a rheumy, neuro and pulm doctors. My rheumy did not dismiss the brain fog she just started me on meds to help with the auto-part. The neuro should do a lot of testing and you need to write questions down in a spiral notebook and take it with you wherever you go (bathroom, kitchen, bedroom, washing clothes).  I forget a lot of things so a pen and paper help. Take it to all your doctor appointments and keep asking questions, keep pushing for answers. I now feel the doctors are listening to me, I do believe I have found the right doctors for me. (they understand me)
Good luck and look up SJS on reliable websites and print out the paperwork and take to your doctor.

I have SJS. I just didn't know if a Neurologist could do anything outside of a Rheumatologist for it.

sarajaane, What meds do you take for Sjogrens?  

Better yet, if you click on your profile at top of page and go to signature area you can list what you have been diagnosed with and what different meds you take.

My foggy days are better lately. Of course, am hibernating with all the snow...soooooooooo not been interacting with people much.

Sarajane,

Many of us suffer from memory issues since our Sjogrens diagnosis.  It seems to go along with autoimmune and it seems to me to be poorly understood by our doctors.  My rheumy, like yours, dismisses the brain fog.  I haven't noticed anyone getting really concrete treatment measures.  If you do, please post as I believe there would be a great amount of interest.  Not much help except you have my complete empathy in this matter.

Take care.

Anna

Hi sarajane,

I've long suffered from cognitive impairment thanks to Sjogren's.  I had to leave my technical job back in April because I was unable to conduct my job safely.  I worked in a chemistry lab.

I am lucky to have a Rheumotologist and Neurologist who both support me, and understand that brain fog can be a part of this syndrome. However, it did take about 20 months for them to come to this conclusion.  Since I started on Plaquenil a couple of months ago I do notice a minor improvement.

Brain fog is a topic that comes up regularly on this discussion board.  Try doing a search for tips on coping strategies. 

Good luck with your neurologist appointment.

Sarajane,
This is a real bummer, I know. I was in the same boat. I had to take copious notes and set up reminders. My cognitive troubles are most likely from vasculits. I have inflammation in my head that we just can't seem to get rid of. During a flare I can't fill out a check, or recite my own phone number and am just plain confused! I ask the same questions repeatedly within seconds. Not only can't I remember the answer, I can't remember I asked. I have even been tested for early onset Alzheimers. Sometimes if I vary a task slightly it will help me overcome the impairment. I might change the sequence of doing something, print instead of cursive etc. Sounds dumb but it helps. Thankfully I can still write and read.  Ask the neuro if you are taking any meds that are making it worse and consider if you are having a sleep problem. The dr may have some ideas from hearing the specifics of your symptoms and when they occur. It could be that several factors are contributing to the problem. I am much worse during a flare - are you maybe not doing well overall? Definitely pursue it, before accepting that it is "brain fog" there may be ways to improve the situation.

I really feel for you, it is so hard to start having trouble doing things that we have always been able to do in the past - hard to accept and hard to deal with.
Patty

Sarajaane, I started taking Alpha Lipoic Acid and Acetyl L carinitine after reading about a European study on them in Readers Digest on how they improved brain functioning. The result of the report was that it took a healthy 80 year old and they started to function like a teenager. They said it may help Alzheimer patients. I tried it and found that my fibro improved. A friend nephew tried it and his MD reversed so he actually started to regrow muscle mass. A gal on another forum with MS tried it and her MS went into remission. I went to the Neuro about neuropathy issues and he suggested those two along with B12.

Joe,

Where do you get these supplements??? I am going to give them a try, I am just getting so much worse with this "brain fog", I am tired of doing and redoing the same thing over and over again!

The Neuro I saw, saw the lesions on my brain in the MRI  but because my blood work at the time was sero neg he said it was all just depression! Some of these Dr's, if it's not spelled out for them, they don't know what, to say!

Feel Well All
Mary

Hey Joe,

I have often seen your post on the supplements, could you let us know the dosage or where to find it?

Thank you,
SueAnn

yeah,
Where can you find these supplements and what brand? I am having more trouble, but I still believe it is worse with an onset of my flare.

I complained of my brain fog back in the fall w/ my rheumy after a particularly troubling few weeks. I was forgetting everything and was really scared. I would be driving my kids to or from school and have to pull over bc I couldn't even remember why I was in the car. It was terrifying. I talked to him and he basically said "yep, that's Sjogren's for ya, get some more rest". Hello!? I'd love to get more rest but I have 5 kids and am basically a single parent - not gonna happen.

Ugh, sorry to hi-jack. I hope u can get some answers at the neuro. If u do, plz post!

I get mine from Swanson's Health foods in Fargo, ND. I have an idea how they were prepared and the quality control. Most places have them. Canada has outlawed ALC but they allow Pre-ALC. Some have ARC instead of ALC. Ratio is 2 parts ALA to 3 parts ALC. I take 200mg ALA and 300mg ALC 2 times per day. Some people take 1000 units of ALC with no ALA.

Talk to your health care professional for appropriate doses for you. Please do your own research. Here are some places you can start.
http://www.thefactsaboutfitness.com/news/aging.htm
http://www.nutritional-supplements-health-guide.com/alpha-lipoic-acid-and-acetyl-l-carnitine.html
Web search for "cell health makeover/acetyl-l-carnitine"

So today I say to my husband "since my short term memory is weakening, will you"  and he interrupted with "wear a name tag."  All I wanted him to do was make sure I take the right meds.  Gees. ;D

ROFL :)

sewandsew,

That is funny and sounds like something mine would say.

Thank you Joe for the information and links.  I have to start with a neurologist and will have this talk with him.


SueAnn

Well I am sold on giving the supplements a try, between helping with the neuropathy and the brain fog I will give it a go...

How did it work for you, Joe did you see any changes with it? I will take even a little change!

Feel Well All
Mary

Quote from: Joe S. on January 23, 2011, 10:22:51 AM
I get mine from Swanson's Health foods in Fargo, ND. I have an idea how they were prepared and the quality control. Most places have them. Canada has outlawed ALC but they allow Pre-ALC. Some have ARC instead of ALC. Ratio is 2 parts ALA to 3 parts ALC. I take 200mg ALA and 300mg ALC 2 times per day. Some people take 1000 units of ALC with no ALA.

Talk to your health care professional for appropriate doses for you. Please do your own research. Here are some places you can start.
http://www.thefactsaboutfitness.com/news/aging.htm
http://www.nutritional-supplements-health-guide.com/alpha-lipoic-acid-and-acetyl-l-carnitine.html
Web search for "cell health makeover/acetyl-l-carnitine"

I also buy all of my supplements from Swanson's, Joe.  My MIL introduced me to them a few years ago and I have introduced my mother and a few friends to them.  You can't beat their prices or easy to use website (even with brain fog!).

Thanks for posting, again, the dosage info on ALA and ALC and the links.

When you find out, let me know! Mine is horrible. I even see posts here and think, "OH. I'm going to post to this one!" Only to scroll down and realize I did the day before and don't recall doing it at all. I forget Dr's appts, birthdays, anything scheduled. I would love an iPad!  ;D I have to schedule everything in my phone with an alarm.

I tried them for 30 days and did not have a flair during that time and thought,"Oh, they aren't doing any thing". I quit for a week and could not remember my name. I went back on them and try not to forget to take them. (I sort a week of pills at a time, so it is just to remember my AM and PM pills). My mother looked at what I was taking and said "I see you have your first meal of the day. How can you be hungry breakfast also?"

Joe S.
I looked up these supplements and I am a little worried about taking the ALC because it helps with testosterone, I don't want a beard or any manly things. I have enough to go thru now. Have any females taken this and not had the problems?

I do not know who has taken it and who has not. If it promotes testosterone you can not prove it by me. My is so low I can swim in Androgel to no effect according to my blood work. I spent a couple of months sticky from head to toe every day. I seem to remember a signature that indicated someone else was using it.

Sewandsew, that is the SAME thing my friend says. lol. But, it's actually good when my friends and family make jokes because it helps me to not worry about losing my memory so much. Shoot, I have been driving and knew where I was supposed to be going, but could not remember how to get there. So, I would have to either slow down or stop, just so I could recall.  ???

I have had brain fog for years---as probably 40 years or so. I had it when I was young and the kids were small and I sure had to learn how to arrange my life in order to get through the craziness of raising small kids. I found that by having a different type of checkbook I didn't forget to write in the information. I could always tell when I was in a flare by my hand writing.

I dono't even talk about my brain fog much to my docs as it comes and goes. I share it mostly with my psych and I have to drive 30 miles one way to see him. When I am having really bad days I don't drive. Usually my description of mine is that I couldn't fight my way out of a paper bag. That pretty much is the way it is. I know that when I am really sleep deprived I can get "dingy" and I just hunker down and keep life simple.

So far I haven't had any lesions on brain scans. I still think that this is a multifaceted problem. Probably some vasculitis with flares along with some depressive issues, fatigue and maybe even nutritional issues, not to mention the hormonal. It will be interesting to see if they ever get it figured out. Mine comes and goes. I also think that social deprivation is a component in this also. When we don't get out and about, interact with people and have the stimulation that keeps us on our toes as to date, time, season, other pertinent activities, etc we tend to stagnate mentally.

Both hubby and I have the issues off and on. We joke that it takes two of us to handle what one person used to do alone. Irish ;D

This past week was one of the worst in brain fog..I would walk around and could not remember what I was doing..it was horrible. I was ready to cry. Kids, husband, mother-in-law, and my own parents don't get it. They think I should be able to call them and tell them everything, but when I forget just one thing, they tell my husband I did not call to tell them that and he comes home and ask me why I did not tell them. I am tired of being accused of this.. :'(

I've been having it bad lately but I've also been in a flare.  Driving home from work everyday but don't remember the actual drive.  The best way to describe brain fog or what I call when I brain stops working is when you feel like your brain has literally hit a brick wall.  You push and push and push and no matter how much you push to think you can't, it keeps hitting that wall.  It's one of the most frustrating things in the world.

I do have lesions on my brain, the Neuro though I had MS but decided against it in the end. I had an MRI in 2006 and again in 2009 and I had more lesions in 2009. At that point Sjogren's was not in the picture.. he couldn't figure it out, waste of a Dr!!!!!

mews,
I have white spots on the brain, on my MRI. The dr. thinks its migraines..which I started having 2 years ago. I am having another MRI next month as a follow up.

It seems the brain fog has lessened this week, either that or I stopped running around, or flare is gone for now...need to write it down on my calendar and also how long it has lasted.

 dainbramage I don't believe that for one minute.... that's what the radiologist wrote on my report and the neuro said write away, no thats not what they are!!! I don't get enough migraines to cause that many lesions..

I have been trying to read up on SjS and brain lesions, but I keep falling asleep when I read for a long time.. so I haven't been getting anywhere LOL but I do understand there is a correlation between the two!!!

Feel Well
Mary

People with sjogrens can have white lesions on their MRI's. I know that we have had a few people on here whose neurologists had a hard time figuring out whether they had Sjogrens or MS.

I can't remember the significance of the lesions right at the moment. I have to have a MRI of my neck and they will do my brain also. My brain scan was clear 4 years ago and it will be interesting to see what it shows now. I would think that if we did a search for "sjogrens brain lesions" we would find some information. Irish ;D

After, my MRI next month, the neuro wants to do a lumbar puncture to see if it is MS also. So maybe thats part of my white spots.  We will see

Good luck Dainbramage and I'll keep my fingers crossed that your doctors can finally pinpoint why you have white spots on your brain.  Also sending you some guarenteed super soft


my friend.

Yeah, have brain fog so bad some days I'm lucky I remember who I am much less anything else. :-\ 

And I feel you Irish, that paper bag has gotten so big these days, or is that I don't climb as well these days? ;) :)


Patze

I've had a couple of MRI's of the brain in the past year and no lesions were present, only calcifications, and I suffer from migraines and brain fog.  Yesterday was probably the worst day of cog fog that I've had, EVER.  Following a conversation left me stymied.  I couldn't recall if I'd done simple tasks at work, where I parked my car, etc. 

Might this be an indication that a flare is imminent?  I've not really had what I believe to be an increase or a flare in my symptoms.  I might have a bit more joint pain one day, but nothing substantial, so I don't know what a AI flare might be, except when I have an increase in GI symptoms (would that be considered AI related since it's probably caused by an AI disease?).

Sometimes I think I try too hard to understand it all...... ???

I just wanted to say THANK GOD FOR A GREAT BOSS!
She said I looked better this week than last. She said I told her the same things over and over. I did ask her if it was the same story or did I make up more stuff..she laughed and said it was the same story. Okay...I don't remember..hahaha
I don't really remember where or what or when or or or Man that was a bad FOGISHES DAY. At least she just let it go and laughed with me...remember she also has some immunity problems.