I've written here before about having memory loss and confusion and being worried about losing my job. I received lots of replies from others who lost or had to quit their jobs. I was wondering if anyone had testing for these issues? My rheumatologist has referred me to the Memory Diagnostic Center at Washington University in St. Louis. I am waiting to get an appointment as soon as they get all my medical records, which should be any day now. My psychiatrist has recommended psychological testing for cognitive impairment. I'm not sure what to expect in this kind of workup. After all these years of pain and fatigue I always thought I would get some kind of disease/disorder that would physically disable me. It never occurred to me that I would lose my mind. I'm scared.
Welcome back. I see that you did what I did to remember who I am on the forum. The memory diagnostic center will give you cognitive impairment testing. Do not stress over it. I have done it. The problem is that they do not have a base line to demonstrate loss.
It will not show a lot of loss unless you are below the norm for your age. It showed that I was above norm for my age which mad me realize just how bad most people my age are. You may be better off than you think you are.
I have been taking Alpha Lipoic Acid and Acetyl L Carnitine to help with memory loss.
Hi KarenR,
Let me also welcome you back to the SJS World and family.
I know what you mean about memory problems and working...just down my alley - so to speak. Yeah, there have been weeks where I could barely remember to get out of my own way much less what I needed to get done.
Have your doctors checked your vitamin levels lately? Whew, thankfully the neuro (at that time) and the rheumy noticed that my vitamin D and Bs where very low and prescribed high doses of each (have an absorption problem).
Now I can't swear whether this really helped with my cognitive problems a lot or it was due to some other meds kicking in, but it sure helped with my exhaustion levels and the pain.
I am by no means "cured" of my memory problems, but they are not nearly as bad as before and I can function better at the office and home. Now if I could remember where I put my car keys, ugh! ;) :D
Take care of yourself -
Patze
Sending you a big hug. It is a scary thing to not be as sharp as we once were and frustrating as well. I hope you will find some comfort in knowing many, many people with Sjogrens have memory issues. The doctors really don't have much of an explanation for it, but do recognize it as a symptom of Sjogrens and autoimmune.
As Joe mentioned, I take ALA and Acetyl L Canitine as well as fish oil, vitamin D3 and a sublingual B complex containing B12.
Take care,
Anna
Hi Karen,
I really feel for you and am sorry you are having to go through this. I just went through an all day Neuro-Psych evaluation with surprising results.
I had gotten to the point that I could not string two numbers together. It was scary. I was sure I was suffering from memory loss. I could remember almost nothing. Would get lost driving. I could not learn anything new. When typing I would think one word and spell it out loud and would type a different word. Very, very scary.
There was a 3 month backlog to get a Neuro-Psych eval. So between the time the Neurologist ordered the eval and I was evaluated I took a 1 month round of prednisone to try and help the damage being done to my hearing. The prednisone helped with my brain problems. So by the time I was evaluated, the brain issues I was having were tremendously reduced; but still present.
The eval. showed that the problem was not with my memory, but with the cognitive, executive functioning of my brain (frontal lobe). The information was getting in, but it couldn't get out.
A previous MRI showed some brain atrophy in the frontal lobe. I went this week for a 3-D scan of my brain and won't know the results for a couple of weeks.
Also, I have been experiencing vestibular (balance) issues and currently going through rehab. It was determined that my inner ear and brain are not communicating. Apparently, caused by the damage to my frontal lobe.
My suggestions to you are:
1. Don't take any prednisone / corticosteroids prior to your eval.
2. Do your best during the eval to ensure a proper diagnosis.
3. After you get through with your eval and any MRI's, etc. You could ask your Rheumy for a round of prednisone to see if you get any relief from the brain fog.
I asked my Rheumy about prednisone helping the brain fog. After she made sure I was not continuing to take the prednisone; she said, prednisone can help many, many issues but is very bad for you and you don't want to continue taking it.
To give you an idea of how it helped me, as I said I could not string two numbers together. After the prednisone during the eval. I was able to string two sets of four numbers together twice. I was flabbergasted at how well I had done.
Of course, I am still having severe issues with cognitive function. Using the wrong words for things. When answering questions, I a lot of the time give the wrong answer and later I'll think of the correct response. This really drives me nuts. Also, frequently, I can't remember what I just said.
Do you know how long the eval will take? I hope it is a thorough (which probably means lengthy) exam. Try not to worry, it won't help. Also, after your eval, you could check to see if there is a rehab. to help you. I'm currently going to cognitive rehab to try to get me through some of my worst issues.
Please take care of yourself. Don't be hard on yourself for not remembering things as it may only make your issues worse.
Karen, please keep us updated.
Happy Thanksgiving!
Shade
Thanks, Shade, for posting an informative, thoughtful post. It is encouraging to hear you've been helped and regained some of your memory.
Anna
I know how scary it is to be so confused. I too have experiences where for example I am at a traffic light and not sure where I am and when my daughter said to me "I am afraid you are going to forget my name" I realized I was not imagining the mental confusion. It now takes me two weeks to read a fluff book, I used to read 3 books/week. Usually two fiction and one nonfiction.
I have to make lists...on yellow paper (easier to spot than white). And I work really hard on staying focused. I am now a scatter-brain.
RE: work.
Read up (or have someone read) Americans with Disabilities Act. http://www.ada.gov/
At work it would be best to provide them with a Dr. diagnosis. Then according to the ADA, work has to accommodate your situation.
There is always a work around for employers... they can "do away" with your position.
I had cognitive decline, memory loss, and loss of executive functions in 2009 from,or so I thought, a series of concussions. I was evaluated, and in those three areas, I was functioning at a lower level than 85% of the population in my age group! Shortly after that I started the Active B-12 Protocol, and improved immensely -- almost back to my old self, I think. I retranslated a text that I had used for my dissertation, to my satisfaction, after that.
Since last January, I have been in a very slow, gradual, decline. Then with the flare of Sjögren's this past September, October, and November, the decline has accelerated. In the last few weeks, I have the "what did I go into this room for" syndrome. I can't remember an intention for long enough to carry it out. That goes for internet use, as well. Not to mention daily tasks. What I *can* do, is write.
Sometimes I don't have enough active vocabulary to speak to anyone in person or on the phone. I want my Sjögren's doc to find a way we can communicate by email, because I am still intelligent on email, somehow -- maybe it's the Google effect. Within the last two weeks we have been trying to start me on meds for Sjögren's, and still allow me to participate in two ophthalmology studies. After two garbled phone messages, I wrote out what I wanted to say to him, called him, and read it over the phone to him. I was arguing for some level of Prednisone -- that I had briefly in October. After the garbled phone messages, and my telephone call where I read the written message to him, he did agree to 5 mg day of prednisone.
I know the prednisone restored my cognitive functioning. I would rather have that restored, and be wheelchair bound because of osteoporosis. To me, prednisone is a matter of trade-offs, and quality of life, not just life per se.
Perhaps it will help with your job performance to self-evaluate (till the testing), what you still do well, or fairly well. If you can write, change oral tasks to written ones, or emails. Use the notepad to track intended tasks, and cross them off. Use a "tickler" file for reminding yourself of upcoming tasks and due dates. Tell your supervisor what you are trying to do, and ask for suggestions. That is, keep the supervisor in the loop with your changes. That's a bunch of suggestions that may or may not work in your job situation, so go over them with a friend or spouse or neutral party.
I wish us the best,
Soycoffee
I had testing done about 7 months ago. My doctor told me I have signs of early dementia. Some days are good and others bad. I still work but not as well as I used to.
I wish you luck and memory!
Jozee, I'm so sorry to hear about the early dementia diagnosis.
I felt very lucky, my eval. showed no dementia and no alzhimer. It amazes me what can be detected from a thorough neuro-psych eval. Hopefully, in a couple of weeks I will know what is damaging my frontal lobe.
Shade
Today was one of those days (at work) that started off not okay and went to worse ending up terrifying after I got home.
I woke up feeling fuzzy, nothing unusual there. Got my coffee and yogurt and headed off to the office. Knew I had to get my paperwork in order and legal research finished and put into report mode so I could hopefully get it out this week.
Immediately after starting sorting and getting federal law book references, I started feeling that all too familiar pressure in my head that I was doing too much. Slowed down and just breathed. Started again.
Kept plugging away until around 11, at which point I knew the headache I started forming around 9 was going into migraine mode. Took leave and came home.
Called hubby around 1 to see if he'd bring home dinner. Took a Fioricet around 1:30.
Next thing I know, hubby is standing in the doorway yelling at me (not in a mean or bad way at all), "HUN!!! HUN!!! HEY!!!". He said I was sitting in my recliner with my eyes open and he thought I was awake.
I finally came to and told him to stop yelling at me. He asked again if I wanted dinner and I said I hadn't made it yet. He said, "I know you haven't made it cuz you asked me to pick it up." I had no clue what the heck he was talking about. I just kept saying what? What?
He finally brought me my plate and after 2 hours, I'm still confused as heck. I slept 5 hours and woke up feeling like I was in a different dimension. Fioricet hasn't EVER done that to me before!
What the h*ll is happening to me??? My work never used to bother me before and now I can't even handle putting a file together or research (which I really like doing!!!!!) and I'm losing time and cognition.
This, today, is scaring me.
Nara - your note made me so sad :( I am so sorry for the scary day you had...that all of us seem to have. I too feel like I am losing my mind sometimes. Last year I remember giving my students a spelling test and asking them to spell the same word - not once, not twice, not three times - but yes - four times in a row! They thought I was playing around with them. I laughed out loud for their benefit...but inside...I was about to have a panic attack! I couldn't believe I had done that. Now...I have a really hard time communicating with people - partially because my mouth is sooooo dry and I have gunk in my throat...and also because I'm afraid I'm not making any sense!
Here's hoping tomorrow is a brighter day!
I have had sjogrens since around age 20 and I know that in my mid twenties I was having cognitive dysfunction. This darn stuff is so elusive though. I didn't always have it and I knew when I could feel it coming.
I always said that when I got funny in the head I could screw my checkbook up big time. Just looking at my handwriting in my checkbook was a clue. I was still working, doing all the housework, caring for kids, you name it. It came and went and still does.
The only thing is my base line is not as high as it used to be. I can still drive the car and actually can drive in big cities better than I did when I was young. I seem to have either calmed down or developed a sense of direction and ability to find my way out of situations. Actually, I tell my hubby that getting lost doesn't bother me anymore cause I have my cell phone, bottled water, snacks in the car and all my pills so what more do I need???lol Better getting lost these days than years ago before cell phones.
Anyway, I had a mini mental status done at my psychiatrists office this past year. They now do them on everyone once a year. I passed and I even surprised myself as my memory can be really rotten and I struggled with it but made it. I truly believe that the autoimmune disease causes some inflammation in our brain that is helped by the prednisone and antidepressants (for the chemical depletion) and harmed some(secondary to the autoimmune) by all the meds that we have to take.
We take so darn many things that can affect our mental status. My hubby has taken 3-4 blood pressure meds for many years and he says that he feels the fatigue from them sort of slowed his thinking way back when he was younger and healthy. We seem to pay the price for our health status. Take meds and be better in one way but maybe worse in another way. Can't win.
I would encourage all of you to ask your doc about trying some prednisone to see how much it helps you. If it helps you then obviously there is something going on that needs attention and a stronger medication may be just what you need.
I guess with the amount of information that is now out there about Sjogrens the doctors should even know enough to start people on the plaquenil earlier in the disease process. The earlier we start with the treatment the less inflammation we will have---at least, that is the theory.
I can only say that I started having those "brain drain" days really early and I am 68 and still having them. I have forgotten more than I used to know, but at least I can still do enough to make life interesting although there are many, many days that I can't find my way out of a paper sack. Also, just to mention that our loss of socialization really can affect some of our mental status. We don't get enough external stimulation to keep our brain going. Maybe we should all start doing the crossword puzzles cause they are good for jolting the brain.
May we all have the patience and fortitude to deal with what we are dealt. Irish ;D :( ;D
I feel for everyone on this thread. The cognition and retrieval pieces of this disease have been more destructive than the physical symptoms.
I used to have a hold on everything. I could juggle kid appointments, house care, volunteer work, etc. I was Mom. My entire identity, including my self esteem, came from this title and the high ability with which I could live my daily life.
Now, I have big holes in my retrieval. It feels like a newspaper that has had a story ripped out; at one point you knew what was in the story but it is now inaccessible. The first time it happened, I was driving my kids to school and realized I couldn't find in my head who our country's VP is. It was a metaphoric blank page. That is probably the closest I've come to a panic attack involving SJS.
My cognitive slips when I'm tired and have overdone it. I can't get words out and sometimes stutter or leave gaps.
So, what I've determined through all this, is that God, the universe, or whoever is pulling the strings has accomplished the goal of teaching me humility. I always knew that if I set my mind to it I could accomplish it. Not anymore. My hubris is gone and I've certainly been humbled.
Thanks for letting me post pure depression...
MB
Quote from: soycoffee on November 23, 2011, 02:33:24 PM
Since last January, I have been in a very slow, gradual, decline. Then with the flare of Sjögren's this past September, October, and November, the decline has accelerated. In the last few weeks, I have the "what did I go into this room for" syndrome. I can't remember an intention for long enough to carry it out. That goes for internet use, as well. Not to mention daily tasks. What I *can* do, is write.
Sometimes I don't have enough active vocabulary to speak to anyone in person or on the phone. I want my Sjögren's doc to find a way we can communicate by email, because I am still intelligent on email, somehow -- maybe it's the Google effect. Within
Oh I loveddd that " what did i go into this room for ? " ahhahahaha- Im in the same boat - and I can still carry a converstaion but have noticed its an EXTRA EXTRA effort to say all the correct words so people wont notice, after ten minutes of that I get nervous and dizzy and have to stop the chat and sit and rest - great for a Communications Major right !!=!=!=!=!
anywayyyyy about the Google effect and email - me too Im better at writing - even if I have so many typos that I go back and check before hitting SEND
talk about getting lost on the street or going downstairs for WATER and craving for a snack at that moment in the kitchen - just to come back to my room with the snack but left my bottle of water !?!?!?!? ahhahahah
I honestly feel this got worse from April to this date because of the Methotrexate, I got pulled of it last Friday and AM REALLY HOPING MY MEMORY COMES BACK these next few months :D:D:D:D -- would be wonderful !
Virgi
Virgi -- yes, the Google effect of sounding more intelligent in work written on the computer, because we can look thing sup. Another part of the effect is that we can instantly check on our draft and the material to which we are responding. Then too, generally grammar and sentence structure survive, though to listen to me on the phone, you wouldn't know it.
Best,
Soycoffee
My journalist tendancies have suffered greatly by my brain fog. Also, I have the attitude of "what the heck" and just go on typing. What the heck, I don't worry about my sentence structure like I used to I just type it and forget to do a spellcheck.
I should be ashamed of myself, but I have lost that little bit of myself too. Ain't it just the pits!!
Also, when we don't have to do a lot of things to keep a job or for money it is very easy to just slough off. Sort of like letting the house keeping sort of peter out. Being chronically ill is not the best thing for maintaining a level of competence cause we don't see that many people.
Also, how many of you find that the thought of going out socially is just exhausting??? Not too bad with just one couple, but put me in a crowd and I just would rather stay home cause it is hard to hear and keep up with conversation. The fatigue factor really figures in here also and others don't get it. Irish