Thursday, July 29, 2010

THIS is My Sjogren's Brain

Remember those anti-drug public service announcements from awhile back? The ones that showed an egg dropped into a sizzling hot frying pan while the announcer said, "THIS is your brain on drugs!"

I thought they were pretty effective. Well, dramatic anyway.

I think they should do a similar PSA for Sjoggies. THIS is your brain on Sjogren's syndrome! Splat!...sizzle...snap...pop...

So, I have had a week where the ol' grey matter just isn't functioning at it's peak. This used to freak me out considerably early on in my experience with autoimmune disease. You know the feeling - it's as if any thought process is in sloooooooow mooooooootion. Retrieval of items in my memory feels like rummaging around blindly for my size in a mile high stack of clearance sweaters at JC Penny. It's possible to find what you need. But it takes forever.

For example, the other night I was in a conversation which involved the brand name Kenworth. It's a brand of semi tractors. Don't ask why. It was a typical conversation with friends which means that all kind of silliness ensues. So when my brain is mush, I just can't get stuff to stick in my short term memory. I kept calling this truck a Kenmore, and we all got sidetracked into envisioning a truck that also functioned as a washing machine......hoo boy. Actually it was all pretty entertaining. Therapeutic laughter, don'tcha know.

As an aside, I want to point out here that my friends no longer respectfully cease and desist teasing me about my gaffes when I remind them that I have Sjogren's syndrome. (With a dramatic sigh for effect). I think that I may have played the S card one too many times. Dang. Use this excuse with restraint, people, for the maximum sympathy benefit. Just a tip.

My point here, and actually there is one, is that several years back, this experience would have led me to frantically google the early signs of Alzheimer's disease with the certainty that I was indeed afflicted. But now, I know that this is just another one of those Sjoggie "things". It's one of those symptoms that are hard to describe and vaguely come and go, but without a doubt indicate a significant change in my body and brain that came with the arrival of autoimmune disease.

If I try to describe this sensation to a non-Sjoggie, invariably they respond with something like this: "Oh, yes. I know the feeling. Sometimes it's so hard to concentrate on things...." Not that there's anything wrong with that response - it's what I would have said in my pre autoimmune days to someone else.

But a Sjoggie knows - this is different. She knows that what she is experiencing isn't the forgetfulness or distractibility that she used to know. She knows that her brain has been fundamentally changed. At least, that's the way that this Sjoggie feels.

It's important to note here that not all Sjoggies experience severe neurological changes. However, a significant majority of Sjoggies do experience brain fog, which is indeed a symptom which arises from the brain and central nervous system. There is an enormous need to continue to study this area of autoimmune disease.

I think that one article in particular summarizes effectively the potential for change in the central nervous system in Sjogren's syndrome. It was written by Stewart J. Tepper, M.D., Clinical Assistant Professor of Medicine, University of Washington, Department of Medicine, Department of Neurology. It can be read in it's entirety on the Sjogren's world website.  Here's a sampling:

The first question that we all want answered is, "how often can nervous system involvement occur in Sjögren's? "We don't really have good studies to tell us. The nervous system may be involved in as many as 20-30% of patients with primary Sjögren's, and involvement can occur in brain, spinal cord and nerves. There may be a slightly higher rate of development of nervous system involvement in patients who have the SS-A antibody (anti-Ro). Having an SS-A antibody present can increase the frequency of involvement of a variety of target organs in Sjögren's. It appears that neurologic involvement can occur at almost any place in the nervous system. The central nervous system is defined as the brain and spinal cord, and Sjögren's can involve the brain and spinal cord. It can also involve the spinal fluid around the brain and spinal cord, and it can involve the nerves which leave the brain or which leave the spinal cord and go out into the rest of the body.

Here's another excellent explanation of central nervous system involvement in Sjogren's Syndrome, found here. This information was taken from a transcript of a presentation made by Dr. Susan McDermott, M.D. at a Sjogren's Syndrome Foundation 2003 national meeting. I have chosen just a few paragraphs from her speech, so please read it in it's entirety.

In Sjögren’s syndrome the whole nervous system can be affected, but here we will focus primarily on the Central Nervous System (CNS), which consists of the brain and the spinal chord. There are many things that can happen in the CNS, causing such symptoms as motor or sensory hemiparesis (one-sided weakness or numbness usually occurring in the face, arm or leg), slurred or garbled speech, encephalopathy (non-specific brain illness), recurrent aseptic meningitis (inflammation of the meninges, the coating that covers the brain and spinal chord, without the presence of infection), seizures, psychological difficulties such as depression, anxiety or panic attacks, bladder dysfunctions, or extraparamital disorders affecting the muscle movements.

Another way the CNS can be affected is by brain fog. This is a condition that most people are familiar with, and yet there is no medical term for it and it cannot be researched by putting ‘brain fog’ into an Internet search engine. The closest term would be ‘mild cognitive dysfunction,’ but this encompasses a wide spectrum of often subtle changes.

Brain fog is often experienced as problems with memory or difficulty focusing or problems with processing information or numbers or with paying attention. It is an experience of feeling not quite ‘all there’ mentally. While some people may feel they are becoming demented or developing Alzheimer’s disease, this generally is not the case, in that this is a different type of ‘dementia’ that is not likely to land a person in a nursing home for chronic care. In fact, brain fog is a relatively common condition that can be brought on by a variety of factors.

It is possible that patients with Sjögren’s syndrome might experience any one of these CNS symptoms during the course of their disease process. However, there are many other conditions that can cause these problems, some of which may be more serious and some of which may not. Therefore, it is important not to dismiss these things as being ‘just part of my Sjögren’s syndrome.’ Instead, it is worth checking with your doctor to determine how concerned to be about any problem you are experiencing and what treatment to embark on for it.

For most patients with Sjögren’s syndrome, is the brain fog going to be related to the Sjögren’s? The answer is yes, it is likely the case as it is consistent with the Sjögren’s picture. Is it diagnostic of Sjögren’s? No, as it is seen in most of the rheumatologic diseases as well as many of the conditions discussed above. Particularly, multiple sclerosis can be confused with Sjögren’s syndrome, as they have very similar symptom pictures. So the best course of action is to talk to your doctor, and if you don’t have a doctor who will listen to you and take you seriously, then find another doctor who will. Your doctor may not always agree with you as to what types of tests or treatments you may think you need, but he or she should at least be open to communicating about it.

The Sjogren's Syndrome Foundation has an excellent patient fact sheet entitled Brain Fog, which offers this definition and some suggestions for coping with brain fog:

What is Brain Fog? Brain Fog is a lay term to describe fluctuating mild memory loss that is inappropriate for a person’s age. It may include forgetfulness, spaciness, confusion, decreased ability to pay attention, an inability to focus, and difficulty in processing information. Remember that gradual cognitive decline from early adulthood is a fact of life. Brain Fog can occur in Sjögren’s syndrome (SS), but other factors might cause these symptoms and should be considered by you and your doctor.

What YOU can do about Brain Fog:

Manage your lifestyle to optimize your health and sense of well being.

Develop a close working relationship with your doctor(s):

• Always report changes in cognition/memory and mood (depression, anxiety).
• Make sure your physician knows about all the prescription and OTC medications you are taking. Especially in patients over 65-70 years of age, a major cause of cognitive dysfunction can be side effects of drugs and drug interactions.
• Inquire about your hormonal status, thyroid function, and blood pressure.

Additional actions:

• Rejuvenate with sufficient sleep. If after 8-9 hours of sleep you are still tired, tell your doctor. 

• Minimize stress and anxiety:
• Set realistic expectations 

• Plan ahead 
• Take breaks throughout the day 
• Learn relaxation exercises and practice them at regular intervals 
• Balance work and leisure 
• Let yourself laugh 
• Talk about feelings 
• Limit multi-tasking and focus on one task at a time
• Reduce caffeine and alcohol.
• Manage effectively musculoskeletal and joint pain.
• Exercise regularly. Adequate physical exercise enhances cognition/memory.
• Train the Brain! “If you don’t use it, you will lose it.”
• Boost your brain power: Continue to work into retirement (part time), learn new skills, volunteer, engage in social and mentally stimulating activities and establish new friendships and relationships.
• Take your body to the gym and don’t forget to visit the “BRAIN SPA” – both will improve brain function. 

• Recent scientific data show that longevity is associated with the successful management of chronic diseases, such as Sjögren’s syndrome, not the absence of any disease!

Well, putting together this info certainly has exercised MY brain for the day. Think I'll take a nap. Now which I find my favorite couch......?


annie said...

I'm going to have to re read this interesting and informative post a few times, as my brain is not functioning today....

This is a scary subject as I have had episodes of traveling by public transport and not remembering what stop to get off for my hospital appointment. I've been going to this hospital for 20+ years, so I knew where to go, but when that happened, I just froze and panicked, and the more I panicked, the worse my memory got. I have had a few such episodes and they are scary indeed because you just blank out and don't even remember where you're going. As my neurologist confirmed, it is brain fog and not alzheimer's. Thank God.

Anonymous said...

Yes, it is a bit unnerving. Not only did I forget my husband's name the other day, but meanwhile I could only retrieve one word from my brain, "chapter".Everything else was just random mixed up letters. It's bad when you have to tap on your husband's shoulder & say "chapter", because that's the only word your mind can formulate. Having conversations only to find myself staring at them in the middle of my own sentence....actually had someone 'give up' and leave once, because they got tired of me not finishing my sentence. I've heard that those incidents may be seizure related. This has been an interesting journey so far.

Anonymous said...

Hi, im new to this blog. Im 33 and have primary sjogrens syndrome diagnosed 3 years ago only when it became severely debilitating after years of doctors ignoring me. It began to attack my CNS and i began having seizures. Soon after my cognition was affected and I was unable to work as an RN or drive legally. It was a fog at its worst. I have been diagnosed with Encephalopathic Sjogrens. Very high dose steroids did not seem to do much except send me manic and neither did methotrexate/plaquinel/immuran I have been on them all. But the good news is I was placed on IVIG (IV Intragram or human antibodies) monthly about a year ago and have seen an enormous recovery. I am driving and within limits able to return to work. Im not in perfect health as i still get tired/ dry mouth/bad reflux etc but I am no longer crippled in migraine or cognitively 'challenged' as a kind way to put it. My immunologist says my form of Sjogrens is extremely rare and they arent quite sure how it effects the CNS/brain. Thanks for your blog. Love it!

Laura said...

OK, so I'm not alone in my forgetfullness. This explains a lot as I'm learning to live with Sjogren's. I really need to take time for brain games or something. Thanks for the info!

Anonymous said...

Thanks for all the bogs. I have yet to be diagnosed but all the systems discussed i am currently's quite scary the not knowing. Your blogs really help me not feel so alone.

Cary said...

I wish I had found your blog sooner. I was looking for information on Sjogren’s and Anosmia and came across your blog and I’ve been reading for hours. I was diagnosed with Lupus and secondary Sjogren’s 2 years ago. Of course I had symptoms for 7 years and family history but the doctors would not listen as usual. I’m on Plaquenil, DHEA and intermittent Prednisone, and I was doing much better until I started with knees and hand pain with swelling. Blood test and x-rays are positive for RA. Six weeks ago I started on Methotrexate. This is helping the pain and knees motion but it giving me a lot of side effects. I had Anosmia now for 3 years, and it was better but now it back since I started the MTX. As you mention I can smell some odors and not others, the ones I smell are confusing, at times, I smell rotten odors that are not there, MRI was negative for anything 3 years ago. I mostly smell this awful odor that I can’t even describe. I also nearly blew up my house by the inability to smell a gas leak in the stove; thank God my husband came home in time. I hope to keep finding more answers and support in your blog. Thanks so much I feel so alone because not even the doctors know anything about what we are going through.

JuJu said...

I am having memory issues worse then normal ageing. My Dr is having me have a brain MRI and doing memory testing. It may be connected to Sjogrens but don't just assume it is. Some of the memory problems you all list sound to severe to just be Sjogrens so always talk to your Dr. don't just assume its something that it may not be.. So thats why I am having it checked. It is scary,but we will see what they tell me.

Anonymous said...

I was diagnosed with Sjogren's a year ago in May. This month was the first time that I notice (really noticed!) the brain fog. The past two days I felt off balance like my head was full of cotton, could not focus, had to write even the simplest thing down or I would forget it. My boyfriend would ask me a simple question and I could not process the information. To be honest? It scared me. I will be calling my rheumatologist Monday to give her an update. How does anyone else deal with these episodes and how long to they typically last? Thanks for the input in advance!

Anonymous said...

LF from México
Brain Fog is horrible……My grandmother has Alzheimer's , and makes me nervous……it feels like I am going to have it…..Sometimes I simply forget that Sjogren's comes with brain fog, attention deficit, and other gifts…..

Unknown said...

I got the cure to Alzheimer from a US doctor who helped me out,now i am living a normal life, and am going to school and learning happily i give all thanks to my parent for helping get a good medication. you can get the medication which is a cure from Dr Phillip here is his mail address on

Anonymous said...

Very good to finally hear some info from other Sjoggies as you call us..I was diagnosed just a few years ago and have not spoken to a single sjogrens patient until now. Still looking for a support group in Pickering area.

JAM said...

Does anyone know of any support groups and or doctors in the Tacoma, WA area? My Dr. looked at me like I was nuts when I told her I thought my brain fog was due to my Sjorgrens. She said it was lack of sleep.

Opulent Resplendence said...

I enjoy singing, and I do it quite often. So, last night, I was in the kitchen making my son a bedtime snack, and I was singing. As I was picking everything up and turning the light out to go back into the other room, I was thinking "I have really got to work on the transition between these two notes." And was planning to work on just that after dropping my kid's snack off to him. By the time I walked through the dining room and living room, though (which takes, at most, about five seconds), I had completely and entirely forgotten what song I had just been singing. And this is while I was actually making a conscious effort to hold the information in my head! I got distracted for, like, less than one second, making sure I didn't stub my toe on the table in the dark or something like that, and the information was completely and totally lost. I spent about a half hour going through my mental library of songs I like to sing, but I never remembered what it was. I gave up after I got so frustrated that I started to cry a little.

My husband likes to kinda poke fun at me for my ability to completely forget what I'm thinking about right in the middle of the thought, and for the most part, I laugh along with him and try to stay lighthearted about it. But people don't realize how much havoc this can wreak on the inside, how horrible and helpless it feels to have parts of your own conscious mind you can't access or hold in control. It's beyond frustrating, it's absolutely maddening. It's scary sometimes, just so frightening to just have your mind go blank and reset like that. I mean, you can see it in my eyes when it happens, I get this sort of vague, unfocused, spacey look for a second, and then my mind is suddenly a clean slate. Like the brain janitor just came in and cleaned the chalkboard. And it is such a desperate feeling, trying not to let it happen. It feels like trying to grasp at water to keep it from going down the drain. You know it's happening, and you want to stop it, but it's just such a futile effort. It's those few second where you can feel the thought dissipating, and you feel like you can still catch it before it's gone completely, but it's too late. You know when it's happening, the feeling becomes so familiar, and it feels like you should be able to take back the controls, but you just can't.

Gahhhh, Sjogren's! You've taken my teeth, you control my mind...are so some kind of alien technology trying to make me more helpless and compliant so that you can use me as a vessel? IS THAT YOUR GAME??????