Hello, All! I'm a new member to this site. I've read all the messages on the Alzheimer's under age 65 board. I'm pleased to know that people with Alzheimer's and other dementias can function for a long time after diagnosis. I'm a 58 year old woman with systemic lupus and hypertension. I've been diagnosed by the neuropsychologist as having depression and a cognitive disorder n.o.s. I was given Effexor which made me worse. Now I have been given the Exelon patch but I am reluctant to apply it because I am afraid of side effects.

My problem is, I have been diagnosed as depression but I am not depressed. I am not sad. I have trouble functioning and I'm getting worse. And I'm becoming more isolated. I stay home except for going to my medical appointments and going to the supermarket and the laundromat. I am divorced with no children. My family all live on the east coast and I am in California. People close to me believe I am having a "pity party" or find my memory problems "annoying". They compare my memory problems with their own memory lapses. Right now I don't say anything about my memory problems and my troubles functioning to anyone. I keep everything to myself.

I hope you all can understand me. I feel like I have difficulty communicating. I would like to meet other memory patients who are struggling along by themselves. How do you function? How do you go about getting help?
Do you tell strangers you have a memory problem or do you keep it a secret?

Thank you in advance for whatever insight you can give me.

Iris L.

Hello Iris L, my name is Tom and I want to WELCOME you to this board that is designed for people like you and I! I’m sorry to hear about your problems. I just look several minutes with my layman investigative skills to find out wath N.O.S. was about and could not find any info. If your Neurologist issued a precription for the Exelon patch, please try it!

In June of 2008 I was diagnosed with Alzheimer’s related dementia. I began visiting this message board in August 2008 and the people have become important to me. I’m sure that you will find a number of supporters here for you. We all have bad days and we were all new once so don't let that bother you.

I will attach a link to a site that will lead you to your local Alzheimer’s Association Chapter. Those people will be able to assist you with local resources and thoughts to improve your life:

http://www.alz.org/apps/findus.asp

Please call the 24/7 Helpline at
1-800-272-3900 if you have any pressing issues!

Hi Iris L,
I would like to join Tom in welcoming you. I'm sorry for all the difficulties you are having. I know it can be pretty scary.
Tom has given you some great links and web sites to check out. Please do so ASAP. The AD Assn has great people and resources to help you.
I agree with Tom, try the Exelon.

Good Luck.

Please, let us know how you are doing.

Again, Welcome. You are Not alone.

Dear Iris: I am sorry to hear about your problems but am not surprised at reactions of others.

Check out my letter: Joanne C. Mueller letter to Dr. Marilyn Albert, Alz. Advisory Board (11 06)
http://freepage.twoday.net/stories/3038870/


I am 72 yrs. old and caregiver for my husand but first of all, I, myself was dx'd as having "Pre-senile dementia." This was many years ago. Only in hindsight and as result of two decades of research and writing as an activist for childrens' health, do I know it was taking melatonin that turned my life around!

I and others have made many posts on melatonin -- some on Caegivers' threads and some "Medications and Treatments."

My letter to Dr. Albert mentions my SSD Award. I had every dx in the book from Lupus to conversion disorder -- "huge files!" My medical visits have dropped to almost nothing and in spite of Bud's continuing moderate-to-severe memory loss and cognitive dysfunction, I seldom have to make an appointment for him either. (Bud refused Aricept. Namenda even at the tiniest smigen of a dose, caused "worsening." His Exelon patch sits in the cupboard after I read it may cause seizures.) I do credit many other supplements but believe for Bud also, that melatonin may be the most important.

You mention your friends' memory problems. The facts are that most person are suffering various degrees of memory loss and this includes our youth. If precautions are not taken re limiting cell phone usage and using an ear tube plus keeping them away from our bodies, the tragic stories will continue at existing rapid pace.

Melatonin is considered to be "an electron donor." It offers much more than great sleep! See Dr. Russel Reiter's book, "Melatonin." Our brains and bodies are electric. When we sleep or have electronic items close to our bodies, we are being constantly bombarded by unnatural signals that disrupt electrons re immune function and more.

These are some of the reasons patients dx'd as falling within "autism-spectrum disorder," as well as Alzheimers and Parkinsons are said to have "low melatonin levels." Google "ASMT gene" -- "abnormal melatonin synthesis."

Feel free to call or email with questions. Take care - Joanne

Iris, welcome to this forum, and thanks for starting with such excellent questions!

First for Tom: When a diagnosis is followed by the letters "N.O.S.," that stands for "Not Otherwise Specified." Translated by me, that means "Sort of But Not Exactly." In this case, it means the doctor found a cognitive disorder, but not one that clearly fits in any of the diagnostic boxes. The best cure for the N.O.S. uncertainty is Time. Two years ago, my bunch of symptoms didn't fit in any little box either. Several months ago my symptoms began worsening in a more clear-cut Alzheimer's direction, and we started treating me as though that were it. The AD treatments are helping, which is another big clue.

In the event you have a progressive dementia, in time that will become clear to everyone. Right now though, you're stuck in the early phase where it's just too hard to tell.

It would behoove you to make new friends and acquaintances. Ideally you'll move back East to be with family, but I know that might not be easy. For the moment, connect with your nearest Alzheimer's Association office, see what they can offer you.

And keep posting along your journey, please! I'd like to know what happens.

Hi Iris, my name is Devon and I too am suffering with terrible memory problems. In my case I can't seem to remember, or learn well specifically with books and artilces that I read. I just forget most of it. It's really troubling. This combined with anhedonia and a flat uncomfortable "foggy" feeling has really left me depressed and angry.

I'm not working now because I get too uncomfortable and anxious when I'm moving about particularly amongst other people. So I feel your pain. In my case we're still trying to diagnose me and I'm in the mist of taking some tests for cognitive decline and impairment.

I hope you know you are not alone and can contact me whenever you would like!

Devon

Devon, I totally understand getting uncomfortable around people. For me, it's a lot about the noise. I have to focus like crazy to catch anything of what a friend is saying, I can't separate out the sounds so well anymore. After a while, it's all mashed together and I can't understand anything.

Is it like that for you, or something else? Also, what's the current theory on your diagnosis?

Oops - Devon, I'm sort of repeating myself from another thread. Sorry!

It's nice to meet you, Tom, Lisa, Joanne, Alan and Devon. Thanks you for the kind welcome. It feels good to finally meet some people who understand what I'm talking about and who empathize.

Tom, before I decided to post to this website, I called the Alzheimer's Assoc. Hotline and described my history and asked how I could get a second opinion with some experts. I was immediately referred to a Geriatric Neuro-behavior Center for my area. I have already had a one hour telephone interview with the nurse. I will be getting an appointment to the University of Southern California to see a psychiatrist who is double board certified in psychiatry and neuropharmacology. They do a full work-up there, and they collaborate with a hospital or laboratory in Boston. (I'll have to find out more about that later.) Also, they have access to other specialists.

The Alzheimer's Association sent me their latest quarterly magazine, and several informative pamphlets about the Safe Return program, memory loss and stroke, warning signs of AD, advice for the patient, and information about the Memory Club. Alan, perhaps there I can meet some new people in person.

Devon, I know what it's like not to have a definite diagnosis. The neurologist never said the word "dementia". He doesn't want to diagnose me. He said the Exelon is to help my "executive functions". Also, he said my blood pressure is too high and that hypertension alone can cause memory loss. It's not necessary to have a stroke. I called the internist this morning to discuss my blood pressure treatment.

Hang in there, Devon. I also get uncomfortable and anxious around people. They talk too quickly or I think too slowly, and I have trouble following a conversation, and I don't have a family member or friend to "cue" me. So I visit with my tv, radio and internet friends.

I am a pediatrician. When I first had to leave my medical practice, people said, Oh, how bad it is to give up so much education. They tried to make me feel guilty. I didn't leave voluntarily, I left to protect my patients. Now that I am older, I just say I took early retirement for health reasons. Many people say, how wonderful to be able to retire early! Not really, when you can't remember and you can't function!

The best thing for me for the "foggy" feeling is to get enough sleep, preferably uninterrupted.

Joanne, I see you are (were?) a fellow lupin. I have been using melatonin off and on for years, but nightly for the past 2 years. (5 mg) I take many vitamins and minerals and eat antioxidant foods. Last year I was diagnosed with diabetes but I can't keep up with the finger-sticking or carb restriction. It's easier to go get a burger or a pizza. Shopping for groceries and putting a balanced meal together seem just too hard at times. When I have a lot on my mind I find it hard to concentrate. I can only think of one thing at a time. As far as cell phones go, I have one older model that I use only once or so a month. It's only for emergencies. I don't go out as much and when I do I don't go far. I have 4 house telephones and 3 of them are corded, only one is a cordless telephone and I rarely use it. It is in the dining room, which I don't use because it is covered in papers. I have to eat at my desk in the living room. I'll look up your letter and read more about melatonin.

So long for now.
Iris L.

Iris, hi.

Has anyone suggested to you that there might be a relationship between your systemic lupus and your cognitive function problems?

Autoimmune disorders such as lupus can cause dementia. Individuals are often affected at a relatively young age.

And in some patients, the dementia caused by lupus CAN BE TREATED -- sometimes almost totally reversed -- with high doses of corticosteroids. It is my understanding that the sooner the treatment starts, the better the chances of recovery. But if left untreated, of course, a dementia caused by an autoimmune disease progresses.

I have found dozens of papers reporting successful treatment of autoimmune encephalopathies. Nevertheless, it appears that most doctors are unaware of the relationship between autoimmune diseases and dementia. Even papers written in the last few months point out that doctors are rarely aware that autoimmune diseases can cause dementia, and that the dementia can sometimes be treated fairly easily.

Dr Richard Caselli, Mayo Clinic (the one in Scottsdale AZ) has published quite a bit on this subject.

caselli.richard@mayo.edu

JAB: It's nice to meet you. Thank you for your input. Yes, I'm aware that lupus can cause cognitive deficits. In fact, my reheumatologist told me my deficits are because of lupus. But she does not want to give steroids because my ANA and sed rate are low. The neurologist said the same, that my titers are too low to treat with steroids. I am still taking an anti-malarial for the lupus.

I am seeking a second opinion at USC Medical Center with a geriatric psychiatrist. I will look for some information from Dr. Richard Caselli at the Mayo Clinic. Thanks again for the information.

Iris L.

Dr Caselli seemed like a very nice man. Best of luck!

Hello, again. Here is some follow-up. I had an appointment today with the LCSW therapist I had been seeing for the past year. I feel uncomfortable because I believe my functioning has worsened, especially since I had been on the anti-depressant (Effexor) for 6 weeks. I stopped the Effexor on Feb 6, about 3 weeks ago. Yet I feel as though my mind is "stiff". I can't think, I can't concentrate, I can't get anything done.

I am trying to cut out all outside activity. Yet the therapist tries to get me to go out do "fun" things, like go to the movies or go to the beach. I don't want to go out. I want to stay home. I can't handle the outside world now.

The more people try to "cheer me up" the more anxious I feel. I walk from room to room in my home. I can't sit down and concentrate. I went out to McDonald's to pick up a burger because I couldn't concentrate enough to cook dinner. I don't like this. What to do?

Dear Iris,
Maybe the Effexor isn't the right drug for you? I would suggest going back to the person who subscribed it and seeing if theres another anti-anxiouty (sp) pill that would work better.
I do know that it takes several weeks for any of that type of medicine to work.
It may help to schedule weekly visits with a therepist(sp) to talk about why you no longer want to go outside and enjoy things.
Best of luck to you and please keep us informed.
Marcia

It's nice to meet you Marcia. I spent a nice year in Kokomo in 1980 when I was on active duty at Grissom AFB. I remember the tiny towns (villages?) of Peru and Galveston. Isn't it funny how the mind can remember from long ago but not from 5 minutes ago?

The neurologist has prescribed Exelon patches but I am afraid to take them because I am afraid of side effects and I can't afford to be non-functional.

The reason I don't want to go out is because I need all of my brainpower to take care of my necessities, like paying my bills, buying groceries, etc. Anything involving reading or thinking is hard for me now. My short term memory is a problem I can only focus on one task at a time. I try to put up boundaries to protect myself.

Iris, have you tried a low dose of Seroquel? For some people, even 25 mg. has helped clear their thinking a bit. I take 300 mg. qhs myself, due to rage and insomnia complications.

Dear Iris,
I do know the feeling of remembering things that happened over 30 yrs. ago but in the same breath trying to remember a co-workers last name has lost me. (I did think of it 24 hrs. later)
It is a small world to find someone here on this site that has been to Peru and Galveston and Kokomo for that matter!!
My mother who is 71 with AD had been on the patch for a year now. No side effects until a couple of months ago. Her skin was itching where ever she would put the patch so the doctor perscribed the pill. Like all of us, she has her good days and bad but please don't be afraid of trying the patch.
May I ask you Iris your age? Just courious. I live alone also. Your in alot better climate than I am here in Kokomo, In!!
Nothing wrong with doing 1 task at a time,.... sometimes I think that for so many years we have multi-tasked that it finally does take it's toll on people.
But I'm concerned about you Iris as well as alot of other people on this site so I hope to hear back from you soon.
Marcia

Hi, Iris, Sherryl Jones from the chat room last night. I have alway been a tough old thing. Life has always been rough. I think of it as just one more challenge. Nobody seems to understand. Especially my family. I am beginning to just not say what I am going through anymore. At this point if I don't talk nobody can really tell. I put on a show. I realize it won't last long, but for now it works. My family is very intelligent. I decided I wanted children rather than an education. Didn't stop me from learning. My oldest daughter is working on her masters in psycology. She knows I have Dementia. Second daughter struggles with learning. Tried to take a course to be a Physicians Assistant and said she couldn't do the critical thinking. I am concerned about her. She is 42 and an LVN. The rest are too young. I think I just do the best I can everyday. When I went out on disability I had to drop my insurance because it was too espensive $1,000 a month. I will be 65 in October and eligible for Medicare. Probably need to get a real diagnosis. Will probably go to UC Davis. As I read this even I can tell how scatter I am.

Sherryl, sure there's some scatter, but not so much that I can't understand you. There are times when I'm talking that I can see my listener's eyes start to fog over, and I know I've lost them. Follow the bouncing ball . . .

That's cool that your daughter is getting a masters in psychology. Does she have any plans for post-graduation career?

Hi, Alan, Marcia, and Sherryl, I was surprised to see my original post at the top of the message board. I didn't get back to people because I missed the posts. I don't remember what was going on, because I read the boards twice a day.

Today is Friday May 22. I've had a very difficult time with dueling diagnoses between depression and cognitive deficit (the doctor wont's say dementia). It seems the doctors can't make up their minds about me. My cognitive deficits are primarily in the areas of reading comprehension, organizing and planning, and dealing with finances. I have trouble remembering conversations, following tv shows, things like that. I don't have trouble driving.

I just started using the Exelon patch 16 days ago, and even in this short period of time I can see a difference in my thinking abilities and my functioning at home. I just hired a geriatric care manager today to help me ocordinate treatments and to help me try to get my life back on track.

I've been active on the various message boards and also in the chat rooms. Funny, after I post, I don't remember that I have posted nor what I said. If I come across my own post later, it seems all brand new to me. I enjoy chatting with the caregivers in the evening. I wish more patients could participate. I don't mind the word patient because it's what I'm used to from the medical field.

Alan, like I said, I'm on Exelon now after having a bad response to Effexor. These meds take so long to find out if they're going to help you. In two more weeks I'm supposed to increase the dosage. We'll see what happens.

Marcia, I've been reading your posts. I think I posted on your thread this morning. It's especially hard to take care of yourself when you feel yourself failing, but to be responsible for another, particularly a confused parent, oh, boy!. There's so much to do but we can't do as much or as fast, so we have to uni-task instead of multi-task, and then feel bad because not enough gets done. Oh, well, that's our lot in life right now. We have to do the best we can. By the way, I'm 59.

Sherryl, I enjoyed chatting with you last night. You said you've had a rough life. You're a person who faces challenges head on. Before I came to these boards and chat rooms I was drowning because I had no help and no one could give me any good advice or even any encouragement. It's only been from these message boards and the chat room people, who I call all my cyber-friends, that I feel any bit of encouragement and that my life can go on. I honestly don't know where I'd be now because the man on the suicide/crisis hotline was of absolutely no help to me. Keep coming back to these boards. Read and post and chat. It all helps. And you will learn a lot, more than you will learn from the doctors. By the time you go to UC Davis when you reach 65, you'll be able to educate them! I hope to chat again with you soon.

Iris L.

Sherryl,

While you wait for the 65 birthday, you can still apply for SSDI. If you get approved, your SSDI payment may be more than your Social Security Retirement. You will get the higher amount even after 65 years old.

You can even get back pay for twelve months prior to applying for SSDI.

It is not a difficult process, especially if you have qualifying symptoms that are obvious. Your prior disability qualifications may be all you need to get SSDI. I assume you are on Calif State Disability.

It is worth a try. The back pay can be a nice lump sum. Also, if you do qualify, you can get back medical expenses paid out of pocket refunded, minus the Medicare premium.

I get my Social Security but not SDI. I think it is because I make too much money. Wow, I'm so rich.

Alan, I don't know what my daughter is doing. We don't talk much. She doesn't understand me or my disturbed son. I can't see her being a phycologist. She just doesn't get it.

Sherryl, there are tons of psychologists that don't understand their own families. They write reports on their families in grad school, but never quite get the human connection. One could even say their career is a substitute for their failure to connect in their own families.

Lots of psychologists don't get it. Better to go with an LCSW, social workers generally have a better human touch.

I agree. I have notice that many of those I know who pursue psychology come from a dysfunctional experience, whether it was due to their own making or participation or just forced upon them.

The LCSW and MFCC (marriage, family and child counselors) tend to approach the needs of other without as much dysfunctional background. Thus, they are more open to the many varieties of people in need.

The worst part about many psychologists is that they think they have the ultimate solution because it may have worked for them. In reality, they just become over-educated deniers.

Thank you for your comments. I think I was trying to get my daughter to understand we all pretty much do the best we can. There is always room for improve, but basically do the best we can. She adamently disagreed. She thinks everybody should be where she is. Perfectly dressed every moment, house in perfect order all the time, education top priority and so on. A little OCD to me.

Your right Sherryl, we are doing the best we can and I hope 1 day your daughter will understand.
Now heres something to ponder about, I'm like your daughter. Always clean and neat, you may say obsessed but that was the way I was brought up and 52 years later I have never changed.
But my children at age 32 and 27? From the time they grew up I watched a messy BD to a messy house with their own children.
What's up with that? Never quite figured that 1 out but now it's not important.
Ok, I'm lieing,.. I'm a clean freak just like your daughter.
Let's just not forget the bottom line (and I know you will not because you and I are in the same boat)
We have to take care of our LO's and hopefully if the day comes our children will do the same.
Marcia

I have always believed that a home can be lived in or lived for.

IMHO, The level of cleanliness and orderliness must not get in the way of it being a home.

This does not justify a trashy filthy house.

But, studies have shown that super clean antibiotic homes do not lead to healthier occupants. The home with a normal amount of bacterial content sets the stage for the human immune system to stay strong. Those homes with shared bathrooms have less illness that those with private baths for each occupant.

Case in point, Up until 1992, I would get the routine sickness that hit society, colds, flu, etc. It would take the usual 3 to 7 days to recover.

Since I started my remodeling business where I routinely come in contact with kitchen and bath sinks and drain systems, my immune system is super strong. Any sickness I get will usually last less than 24 hours.

I read a study recently that suggested a link between weak or malfunctioning immune systems and AD, MS, and various other neurological diseases. There was not yet enough evidence to support this idea from a scientific standpoint,

As for our house, we will try to keep it clean but not fret when it isn't.

At least we do not have house cats that jump up on counters. That is where I definitely draw the line.

It's been three months since I first posted to this message board. In that time I've learned a lot of information about living with my condition, I've been supported, cheered up, and calmed down, and I've made many cyberfriends. I've come far from calling the suicide/crisis hotline because I believed I had nowhere else to turn. I don't know where I would be without you all.

I have good news to report. I've had recent visits with the geriatrician, the neurologist, and the rheumatologist. I reported to them that I have experienced some improvement in my cognitive abilities and overall functioning since I began the Exelon patch on May 6, three weeks ago. They were all surprised and pleased. The plan is for me to complete the first four weeks at 4.6 mg/day, then to increase to the 9.5 mg/day dosage.

The neurologist wants me to consult with an infectious disease doctor to see if the etiology of the cognitive deficit might be viral, because of some abnormal viral titers I had. The rheumatologist believes that cardiolipin, a common lupus antibody, caused brain damage and subsequent cognitive deficit.

For the first time I have a treatment that is specifically devoted to the cognitive decline I've been complaining about for the past 22 years. I'm finally getting treatment for cognitive deficit that is distinct from anxiety/depression. This is despite the warning from the USC neurologist that only patients with the specific biochemical pathology of Alzheimer's disease or Parkinson's disease would respond to Exelon. I'm looking forward to seeing what progress I will make over the coming weeks.

Thank you all for supporting me and cheering me on while I'm dealing with this devastating, life-changing disease.

Iris L.

Iris, that was beautiful!! It's a pleasure and a privilege to be one of your cyber friends.

So, you're finally being listened to? I suspect a trick . . . yes, a fiendish plot (said with head hunched between shoulders, while rubbing hands briskly) to . . . to . . . well, something!

Thats great news Iris! So glad to hear your feeling better.
Hugs,
Marcia

Well, hallelujah! That is truly wonderful news, Iris!

Iris,
I am so glad you have good news. We are all pulling for you.

Sharon

Wow Iris,

This is fabulous news! Your own "Plan of Care."

Congrats! Keep fighting for your rights!

We're here for you.

I'm going to use the term neuro-psychiatric lupus until a better term comes along. It' kind of an all-inclusive term, since I have had many neurologic symptoms along the way, some like Parkinson's, some like multiple sclerosis, and some like AD/FTD.

Iris L.

Iris, my PCP is most comfortable saying I have a general neurodegenerative disorder. I gather that he considers it most likely that I have one neurological disorder that's eating me head to toe, as more likely than having two concurrent disorders. He's convinced me that it really doesn't matter what we call it, the treatment would be the same.

My PCP has told me, using a nice quiet voice, that I also should focus on now, and not think about my future. . . . Is it just me, or doesn't that just make you want to research and see the future that I need to not think about?

As soon as I posted about neuro-psychiatric lupus I felt uncomfortable about it. The reason is that I don't want people to think I have a psychiatric illness.

As far as the name of an illness, since many symptoms overlap, it matters as to what the treatment will be and what the prognosis will be. Even between Alzeimer's Disease and Fronto-Temporal Lobe Dementia, the manifestations of the disease are different, even though the eventual end point may be the same in both diseases.

People, especially doctors and other professionals, are always telling me how good my memory is. When I hear that, I feel distraught, because I am not understood. I feel discounted. That's when I feel like I have a psychiatric disease. I feel anxious and depressed. I don't feel anxious and depressed on my own, only in relation to how other people approach me. So I feel like any psychiatric illness I might have is iagrogenic. For the laypeople, this means the illness in not natural, but induced by the medical profession itself.

I believe that I think more about how other people perceive me as it pertains to memory loss, as much as I think about the memory loss itself. And that's not good for me.

Iris L.

Iris, please forgive me while I ramble a moment on your predicament.

How about calling your illness neuro-degenerative lupus? Or, pervasive neurodegenerative lupus?

Something along that line would keep the word "psychiatric" out, and I think describe it more precisely.

Oh bitter irony, that people trying to cheer us up, are the very ones who by that act are hurting us! But Iris, I figured out a long time ago that the myth of psychiatric vs. medical is something maintained by insurance companies. So they can pay less for psychiatric, of course.

It's so they can tell the psych patients they're causing themselves to be sick. I've heard that one, "Why are you doing this to yourself?" meaning being depressed, being anxious.

I remember you said in one post, Alan, that stress cuts cognition by one half. So I'm doing my best to limit stress in my life. Thanks for the pep talk.

Iris L.

I think I'll go with neuro-cognitive lupus. I think it fits.

Iris L.

Iris

Congratulations. You now have a name to your beast!. Regarding Alan, I remember him talking about depression and how stress cuts cognition by half. In fact, I think he was writing to me.

Anyways, I'm so very happy that you now have doctors that you trust. But, most importantly, you're settled with the diagnosis.

Wishing you much peace and strength in the times to come

Mary

"Neuro-cognitive lupus." I like it! Short and snappy, totally clear . . . perfect!!

Alan

Sometimes you remind me of the show, "House".
You're a trip!

M

Iris,
I like it too. It's great to have a name!

Hang in there.

Iris, I like your name for the "neuro-cognitive lupus"! I often use the term NPSLE. That really confuses them. (neuro-psychiatric systemic lupus erythematosus).

My psychiatrist said that sometimes SLE-related thingys can cross the blood brain barrier when a virus attacks and then attach to neurons, disabling them. I can't remember which lab test can suggest that.

You know what? I used to be able to retrieve all of this kind of info easily! I wrote up several technical-type articles for our local lupus foundation newsletter.

JAB, I think you're right about the treatments for NPSLE. High-dose prednisone can help, but it can make cognition worse, too. I take alow dose to try to keep the whole disease process (SLE, RA, and others) slowed down a little. But it might be causing some fo my cognitive problems, too.

Iris, did you find that the Effexor make things worse? Did you have trouble getting off it?

One more question: I heard someone mention Seroquel. Does it really help? I was wiped out with 1/16th of the dose I was told I could take. I couldn't see any benefit, either.

And Iris, I have been seeing my psychologist for over 11 years now. He's just about the best thing that's happened to me. He's helped pull me out of anorexia, suicide attempts, and now he's helping me deal with all this cognitive stuff. He and I have a very good working relationship.

He's part of my all-over team.

You and I have so much in common, such as SLE. I also live alone, without a support system to speak of. I've been following your posts to see how you deal with things. Thanks for the help!

Sue, here's the short version re: Seroquel. Many dementia patients, including me, are prescribed it, most often for irritability. The effective dose is unbelievably different, depending on the person. Some people are tranquil from just 25 mg, all the way to people like me who have permission to take up to 800 mg a day.

That's among people it helps. A pretty large number of people don't benefit from Seroquel. Many of them are helped by another of the atypical anti-psychotics. If not, some benefit from taking some of the drugs for seizures and mood swings, like depakote.

When I was 11, I had a heart infection, and was given massive doses of prednisone. It quickly made me somewhat deranged, paranoid and angry, withdrawn. It went away pretty soon after the medication was stopped.

I've had a few more tests since I posted before.

One doc tried a PET to see where my brain was appropriately active. Normal. I've had MRI,CT, SPECT, EEG qEEG, and PET. Nothing abnormal has shown on any of them. No vascular problems (although the last MRI with contrast was 3-4 years ago). No fMRI, either.

Iris, all I can figure out is that it has to be the lupus, Sjogrens's, etc. Those are known for causing cognitive problems. But my docs say I have too many cognitive problems for them to be autoimmune. Have you ever heard that? I can't really remember if I've asked you that earler. (In fact, I was surprised to see that I had posted to this thread at all before.)

As for the Effexor, It took me literally years to get off it. I was told by a person at the company that makes it that I might not ever be able to get all the way off it. But I did it, shaved pill by shaved pill! The drug does not seem to make any difference in my cognition, but since I used it at a high dose for many years, who knows?

I'm registered to use my local paratransit because of my documented difficulties in even finding the buses. I"ve a door-to-door designation because of this.

So, what could the mechanism be for autoimmune cognitive dysfunction? Other than vasculitis. What else can there be?

One doc wants to try a lumbar puncture to look for certain compounds. Iris, have you ever heard of this?

I've begun having severe gastro and vertigo problems. This vertigo is not related to vestibular system (according to otologist).

To me, these, since there is also no physical reason for any of my symptoms, I"m beginning to wonder if this is all CNS SLE.

Have you had any of these, Iris? In addition to the cognitive stuff.

It's the pits to be in the ER twice in 2 days because of vertigo and vomiting, and I can't remember how long it's been going on. I can't even tell the paramedics how I'm feeling at that moment.

I called 9-1-1 the second night, but couldn't find a way home. Most people don't like to dragged out of their sleep to take or bring someone home from the hospital.

I don't which doc I need to make an appt with, nor which one has told me I should take Zofran. Should I call all of them to see if they'll write the script? I don't know.

I'm getting scared that I am getting pretty physically sick, and my brain can't help me get aid.

Iris, what would you do? I'm my own caregiver, too.

PS, I have a friend whose daughter seems to have been born with SLE. That would be interesting to deal with as a pediatrician, huh?

Hi my name is Sierra and I recently turned 18. My father is in the process of being diagnosed with Alzheimer’s, but it’s pretty obvious that’s what it is. I just recently left home for college too far away to come home every weekend, and since I left he seems to be getting worse much faster. My mother is not willing to help with anything, and I have a sister who is 11, and a brother who is 14. Before I left for college, I did most of the housework, and drove my siblings, bought and made the meals, etc. and now that I’m gone, my Dad was supposed to take over, but that isn’t going well. Has anyone been through a situation like this? I’m not sure what I should do. I feel like I should be doing something, does anyone know?

Welcome back to the boards, Flowers! It's good to see you again. A lot has been happening with me over the past few months. I am on Exelon patch and Namenda and making improvement in my memory and overall cognition. Not a lot, but to a sufficient enough degree that I want to continue the medications.

I'm getting Cognitive Rehabilitation through the Stroke Rehab Department of our regional medical center.

I've been on a couple of new medications to treat rheumatic and arthritic pain, first Limbrel, now Celebrex. I'm on Xyrem to treat my sleep disorder. And I'm on Traditional Chinese Medicine to treat a post-viral condition, which the Infectious Diseases doctor labels as Chronic Fatigue Syndrome. Here is the link for that thread: http://alzheimers.infopop.cc/e...11002361/m/244101771.

I've also been diagnosed as having Anti-Phospholipid Syndrome, which as you know is associated with the lupus anti-coagulant.

Whew! When it rains, it pours! How many diagnoses can one person have? I believe that the doctors are in a data-gathering phase now. There's much that they don't know about lupus and the brain. One rheumatologist at USC told me I was the worst neuro-cognitive lupus patient she had ever seen. She didn't really have any advice for me, but she did prescribe the Celebrex. Pain relief is of primary importance. We have to do everything possible to eliminate controllable assaults on our cognition. Since the doctors don't know what to tell us, what we can do is educate ourselves and try different therapies.

So long for now. I'm going to read your post again tomorrow and write more to respond to your questions.

Iris L.

Iris

Seirra can you talk with you Dad's Dr? He needs help & he's not getting at home from your Mom.

Dear rgrman67,

Hello and Welcome to the AD Message Boards.

Are you a person with AD/related dementia or a caregiver??

How can we help?

Thank you all for your responses, I'm taking them all in to consideration, and I'm going to start right away with what you all suggested.

Thanks,
Sierra