Brain Fog and Neurologist.

[sarajaane]

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.

[dainbramage]

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.

[sarajaane]

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

[newhorizons]

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.

[ohiolady]

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

[Carebear]

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.

[Patty]

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

[Joe S.]

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.

[mews]

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

[SueAnn]

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

[dainbramage]

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.

[carimeaway]

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!

[Joe S.]

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"

[sewandsew]

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.

[Joe S.]

ROFL