Can Sjogrens cause true dementia?

[ohiolady]

Carebear,

Will you let us know what your neurologist has to say.  I understand your fear as well.

Anna

[inga]

Technically one does not die of dementia, unless you count not feeding yourself or not drinking, but no, you don't die of dementia, but the sequela of.  My mom technically died of kidney issues.  From the onset of moderate dementia, it took 10 years.  My grandmother did not get 'senile' until older, and she ended up dying of a stroke.  My mom probably started to lose her faculties shortly after age 65, my grandmother not until after 72.  My mother was far more socially isolated, her choice, btw.  Social ties and a role in life are extremely important, but, not the only variable.

There are many causes of dementia.  CNS vasculitis is the more common occurance with Sjogren's.  Most people with Sjogren's don't have vasculitis.

Lots of concurrent conditions can occur to people with Sjogren's, Lupus or other diseases....just like our eyes are blue or brown....it's genes.....plus environment.

[Bopeep]

Bopeep, so sweet of you to say........I just want my mom to have some sort of relief.  I understand what you are saying, however, as I have had my own personal health issues that were so completely misunderstood or not recognized.  Mom knows I am talking to all of you and she is very excited.  She also says thank you.

Regarding the dementia, what we see in Mom's instance is short term loss more than long term or memories from long ago.  She may ask the same thing over and over in the space of 10 minutes without any recollection.......but she can remember things that happened earlier in her life.  As I am typing, I think it may be memories that occurred prior to the SJS!  Had not thought of that until now.  BUT.....she may get up and have a terrific day filled with clarity that is "normal" for her age.

Hi Chris thanks for that. Stan also has short term memory loss but he can remember the strangest things from way back with clarity.

Please dont think that you've caused any of us any further stress, Im sure that others here will say the same. Thats exactly what this site is for, not to alarm, but to help keep everyone informed.
I for one think this thread is REALLY interesting, so thankyou for sharing with us.

[Carebear]

Hi Anna,

I will share the results of my neurology appointment.  We will be reviewing the results of my September neuropsych testing, which I know you had done recently yourself.

I am frightened at times...especially when I get confused while on a walk in my neighbourhood or I when I can't remember how to grocery shop.  The fact is, our personality, who we are, is woven delicately in our brains.  And when my brain malfunctions, I feel like I lose a bit of myself.

Bopeep is right Chris.  You've given us an opportunity for dialogue on a topic that is very important to myself and to many others in this forum.  And I appreciate it.

[Chris58]

Good Morning.  I am wondering what the specific purpose is of the neuro-psych test you mentioned.    I would also like to ask those suffering with memory issues if it becomes worse if you are stressed or upset about something.  OR, is it worse if you are taken out of your normal surroundings??

Have a blessed day Everyone! Chris

[Carebear]

Hello Chris,

The purpose of neuropsych testing is to assess the brain functioning through structured and systematic behavioral observation. These results are then compared to the results of a large data base of "normal" patients who are of the same age and educational background.  The tests are designed to examine cognitive abilities, including speed of information processing, attention, memory, language, and executive functions.

When I am stressed, my thinking difficulties and confusion are magnified.  I've noticed as well that after a stressful event, I can experience these difficulties for at least a day or two.

As for putting me in an unfamiliar place....yes, that is a real problem.  It is helpful for me to plan something like that in advance if at all possible.  I try to look at diagrams or photos of this place before I get there.  And I have to give myself extra time, and not feel rushed.  Creating lists, writing instructions...these are all strategies that I have found helpful.

[ohiolady]

Thanks, everyone, for replying to my thread, I appreciate your responses.  I've had Sjogrens for 4 years and my memory issues began 3 years ago.  I was really sick and it was like this fog descended upon my thinking processes.  Prior to Sjogrens, I had an annoyingly good memory.  I never misspelled words, had great organizational skills and was mentally very sharp.  I've since improved but still am not the person I was prior to Sjogrens.  I think I could just accept that Sjogrens has affected my memory but I'm faced with my mom's Alzheimers every day.  I would never want my family to feel the pain I've felt watching my beautiful mom lose her mental faculties.

Carebear, I will look forward to hearing about your results and you can pm me anytime.

Anna

[Chris58]

Carebear, good luck with your testing.  Anna, your descriptions sound so familiar.  My mom was so afraid she was developing Alz. when it all started.  That was her fear, too. 

Take care, Chris

[Liz D.]

I feel very concerned about thi post as I feel my brain is not working like it used to.

Like Anna, my memory used to be annoyingly good.  My friends would call me to remember something for them knowing they would forget and I wouldn't.

Lately, I can't remember anything and I am starting to repeat myself.  My husband keeps saying to me, "you already told me that."  I have been diagnosed with SJS for 6 years, but probably have had it for 10.  I am only 47 and not quite ready to start losing it.

Last week, I had a very bad experience while driving the car.  I was on the highway coming home from the eye doctor and all of a sudden, I was at the exit where I was supposed to get off -- about three miles away from where I just was.  It happened in an instant and I do NOT remember driving those three miles.  It was almost like I time travelled!  It totally freaked me out.

Liz D.

[inga]

The more you worry about this the worse it gets.  As I said I watched my mom and gmom get 'senile' and die.  I am 58 and have what I perceive to be issues....on the other hand, I have more stored in my brain than ever....how to use a computer.....raising a 9 month old child, etc.

I toss trivia out of my brain for lack of room on my 'hard drive'.

I too had a fabulous memory, no spelling errors etc.  Now..sheesh.....I think I am senile.  I talk to myself....I repeat things to my hubby (but I have to, he has selective listening and wax in his ears which he refuses to remove or he would have to listen to my incessant babble.  I chase him with the debrox and he runs and refuses to use it.)

I panic pretty easily, yet, I have made it thru large airports all by myself within the last few years (likely wouldn't do it again now, but, 3 years is not too long ago)......I navigate when we drive places, and, no I am not as sharp as I used to be, but, I do get us there.  I can still follow a recipe.

I don't sweat the minutia.

If I am to get dementia, there is so little that can be done about it, that, worrying about it is not helpful.  When I was 34, I was faced with a truck heading at me at 50mph over the center line.  It hit me and my then 4 and 6 year old.  I was lucky we all survived, and I got to live the rest of my life, albeit not fully intact.  When your time is up, it is up....if you linger in no-mans's land, perhaps you won't know it, that is what I hope.  I hope my loved ones will care for me and love me despite the fact that my mind retired and body did not, regardless of the reason.

All disease effects your brain.  The more worried you are about it, the worse it gets.

[Chris58]

Liz,  I am sorry for your fears.  I can tell you that my mom had a memory like an elephant.  Never forgot anything.  She is very much aware of the changes that have taken place.  I don't recall her telling of an episode like you described.  She does repeat and we all must be very careful not to show on our faces that we have already been told or asked something by her as it upsets her.  I recently purchased a cute chalkboard that is kept at their desk in the kitchen and Dad writes on it where he has gone and when he should return.  She utilizes that with humor now.  What we actually saw is that her frustration in what she saw happening actually made it worse due to the panic feelings she would have.  BUT, this has been a slow progression.  Did not happen overnight.

Chris

[ohiolady]

Liz,

I know how you feel.  Some of the things I'm trying to do is not focus on my memory issues, I've joined a study group, am exercising.  I am going to Curves where I can exercise and be social with other ladies.  I heard a neuropsychiatrist say keep learning new words.  So I'm writing down words that I'm not sure what they mean and looking them up in the dictionairy.  One of my sons speaks Spanish and I'm thinking of learning a few words and conversing with him, just for fun.  They say you don't have to master, just make the effort.  

I'm trying to focus on the fact that we all only have today.  None of us really have any guarantees about tomorrow.  I know all of this intellectually but helping with my mom constantly slaps me in the face with the reality of it all.  I'v had cancer but I don't dwell on its possible return.  I push it out of my mind and live my life until it is time for another scan and then I fret until I get the results.

I think this thread has been good for some of us to voice our fears and to come up with some constructive things to do to handle that fear.  It always helps to know someone understands how you feel.

Anna

Liz, feel free to PM me if you need someone to talk with. 

[Liz D.]

Anna, Chris, Inga,

All your responses and suggestions are great!!!  That is why I love this website -- it can truly calm me and help me get perspective!!

The worrying will only cause the problem to get worse.  I also have to keep in mind that my body has just weaned itself off of Vicodin and NSAIDs from having costochondritis when that incident in the car happened.  It was the first time I had driven in three weeks, so I was probably a little extra nervous.

Thank you guys!!!

Liz D.

[Jag]

I wanted to point out that 'dementia' is a generic term that isn't specific. I've lost brain function over years.... at first it was so subtle that I didn't even notice. It was picked up by a neurologist during a visit for trigeminal neuralgia in 2004. I had testing done last year (I think) that was an MRI spect scan. It showed that areas of my brain (which coordinated with complaints I had) weren't getting enough blood. My brain blood flow was less than 50%. I was put on plavix and it went up to 54%. The doc went back and forth from early-onset alzheimer's to strokes then vasculitis. I asked again today about IV steroids as my 'fogginess' and 'confusion' has gotten a lot worse. I've been on low dose prednisone for over two years, and just started metho at 7.5 mg/wk. He said I couldn't do IV steroids while on metho. However, the headaches I'm having every day are horrible, and my memory is so bad that I've forgotten to pay bills even...which resulted in my electric being shut off! I had the money, but couldn't remember. Even when I do remember something, the thought is gone so quickly... it's scaring me a lot.

I had the results of those tests sent to the rheum., who also didn't do anything. I've gotten lost on familiar roads, I can't do two things at one time and have a hard time following conversations at times. I think there should be an arteriogram done...but I can't find a doc who's interested enough to do one. I think my largest battle has been finding docs who are compassionate or empathetic. I was put on platel...but I'm really afraid of the risks because I've had episodes of congestive heart failure since 2006.

[irish]

I am a RN and worked in geriatric nursing for 25 years with the elderly and I am approaching elderliness (is that a word?) myself. I have dealt with a whole lot of dementia. By the way, dementia is really a very broad term that is used to describe people who have lost their ability to function mentally---in many ways, believe me!!!

Just about every patient in the nursing home could have a general diagnosis of dementia. I think that we would be better off if we did not tag ourselves with this until the researchers figure out just what the heck it is that we have. We all suffer the same but yet we suffer different. Of course, the vasculitis is a different matter.

I have had brain fog off and on for many years. I know that stress and fatigue make it much worse. I also know that when my thyoid acts up I have it. So, just what is causing this "fog" and am I suffering from "fog"from several health issues? Another thing that will cause me to feel foggy is when my blood sugar is going down too low. Thankfully, I am usually able to tell and eat something and soon feel better.

I would bet that most of us are more apt to have a diagnosis of dementia because of hardening of the arteries. This is when the blood vessels have plaque that adhers to their walls and decreases the amount of blood that can be transported through the vessel. An example is the loss of blood to the brain. We are all more apt to have this problem than the dementia of sjogrens. So many times a person will die unexpectantly and on autospy it is discovered that they had bad cardiovascular disease or the plaque in the arteries. It is the price we pay for living in a country where we get to eat too much fatty food.

So much of the time our fog will come and go. I wish that the researchers could figure that one out. I often wonder if it could be from our brain chemicals being in short supply. Also, I wanted to mention that when we have memory loss it usually is the short term memory that is lost. For some reason the long term memory stays around much of our lives. We can remember many things that happened when we were kids or raising kids and we can't remember what we did 10 minutes ago. Memory loss from most disease is the short term stuff. There are occasions when people will have a little "quirk" with their memory loss and be a little different from the run of the mill STML or short term memory loss.

When you take care of an older parent you will find it almost interesting what they will remember and what they forget. I still think that it is wonderful knowing that when I am old I will be able to live in those happy young years. Sure beats the heck out of worrying about paying the bills and doing business in todays world.

It is a scary thing though and as was mentioned, it doesn't pay to worry about it because we can't stop it. Our time is too precious to worry about these things. We need to take care of ourselves to the best of our ability and keep active physically and mentally. I want to mention that many times as we age our body is not able to handle the tranquilizer, antidepression drugs or pain meds at the same dose. This is because as we age we are unable to metabolize medications as well and the drug level will build up in our body. This can result in a dulling of our senses or an inability to concentrate as well or even zone out like a "druggie" would. Make sure to tell your doc if you suspect that you are getting over medicated so that adjustments can be made.

Another thing to remember with drugs is that if we don't drink enough and get dehydrated our blood level of drugs will increase and that can make us over medicated. This can affect even our blood pressure medication. We have to be aware of what meds we take, their dosages and our fluid intake. One simple way to check if we are drinking enough fluid is by the color of our urine. If it is dark yellow or concentrated we need to drink more. With good fluid intake most people will have a lighter yellow urine. If a person is taking a fluid pill you should talk your fluid intake over with your doctor. I am obviously not a doctor but these are some simple info that have even been in womens magazines.,etc. So much to remember when we have health issues. Irish