I have news to report. I had an appointment at USC's Keck School of Medicine's Center for Neruologic Care and Research. I was interviewed and examined by the Director of the Memory Assessment Center. She reviewed reports from other doctors, and reviewd my SPECT, PET, and 2 MRI scans. Her diagnosis was depression. She said people used to speak of the pseudo-dementia of depression, now they call it a true dementia. She also said I had other reasons for dementia, including lupus, hypertension, and a medication I had taken for several years. But she saw no evidence of Alzheimer's. She did not recommend any of the memory drugs for me. She said they are specific for the biochemical derangement of Alzheimer's and are not for generic memory problems.

Her recommendation was cognitive rehabilitation and treatment of depression with cognitive behavioral therapy.

I see from the posts that many patients have been diagnosed with depression or are on anti-depressants.

Has anyone had cognitive rehabilitation? Where would one go for that?

Has anyone had cognitive behavioral therapy? How can changing one's behavior improve one's memory and cognitve functioning?

What's going on here? I'm bewildered. I can accept the diagnosis but I can't accept the treatment. There has to be more.

Iris L.

Hi Iris and welcome. I think you need a second opinion, that's just my opinion, I was diagnosed at 38 years old and it was hard in searching and took 2 years to get a team of doctors that new what they were talking about. I was also sent to cognitive retraining and therapy for 6 months and it did nothing for me and they finally realized I was already doing everything that they had suggested and there was nothing more. I would encourage you to see a neurologist and talk with your local Chapter.

Tracy

Hmmm. My first reaction is the same as Tracy's ... this just doesn't make sense. You'd think somebody that high up at USC would be good, but ...

Talking semantics doesn't do much for me. As far as I know, dementia due to depression may sometimes be reversed with proper treatment, so whether it's called a "true" dementia or a "pseudo" dementia is irrelevant.

Is this neuro associated with the Alzheimer's Disease Research Center (ADRC) at USC? Because if she's not, then I'd try talking with those people.

The lupus could be causing dementia, we've talked about that a while ago, and you have other medical issues that contraindicate high doses of corticosteroids, right?

If the cardiovascular problems are contributing to the dementia, then you might very well benefit from the "memory drugs", which are routinely prescribed for, and do help, patients with vascular dementia. I don't see the harm in giving them a try. (Of course, I'm not a doctor, but still, that's often done for patients with dementia who have rare disorders or are difficult to diagnose.)

If depression is contributing to the dementia, then why not prescribe an antidepressant? That's standard therapy for depressed dementia patients.

Cognitive therapy can be helpful for early-stage dementias, I've seen some studies on that. That can help you function better, and delay progression. I'm surprised she'd just tell you to try therapy and not tell you where to actually GET the therapy, though! I'd ask the ADRC people for recommendations, and if they can't help, then find a good stroke therapy center near you.

Given the lupus, I think I'd also be talking to Mayo, either Rochester or Scottsdale (Dr Richard Caselli in Scottsdale.)

You might also give Axona a try. http://www.about-axona.com
This would be helpful for any dementia that involves mitochondrial dysfunction, although they've only tested it with Alzheimer's patients so far. It's a brand-new medical food. I've heard they'll give your doctor free samples if he asks, and then if it's helping, there's a 20% off coupon available at that site.

Thanks for responding and the information, Tracy and JAB.
I was at the Memory Assessment Center of USC. I'll check to see if it is an Alzheimer's Disease Research Center.

The doctors seem to believe that if lupus is the cause of a dementia, the lupus antibodies have to be elevated. In my case the antibodies have been in the normal ranges for at least a couple of years. To me, this is because I have been successfully treated by the lupus medication, Plaquenil. I have not been on steroids. On the other hand, from my reading I believe that the cognitive effects are not antibody related.

I had been on an antidepressant for 6 weeks and I felt worse; my mind felt like is shut down. I feel like I lost 2 months of my life.

I still have the sample of Exelon. I'm thinking of trying it but I'm afraid of side effects which would cause me to have difficulty driving or keep me from further caring for myself like the antidepressant did. I live alone so if I can't function nothing gets done.
I had blurred vision from the Neurontin that I took in September last year. I have to drive to Orange Country to see a retina specialist next week because of recent changes in my retina.

I'll look into the axona, since that looks like a nutritional supplement. I'll go over everything you both wrote over the next few days. I'm still trying to rest up from my 50 drive to USC. In addition to the cognitive deficits, I still have to deal with the pain and fatigue from lupus.

Thank you again for your input and your interest. It's good to know that there are people who know what they're talking about and freely share what they know to help suffering people. I really appreciate you both.

Iris L.

Iris, if I were you, I'd talk with Richard Caselli. He's published quite a bit on this subject (autoimmune encephalopathies), plus he seems like the nicest guy.

caselli.richard@mayo.edu

http://www.mayoclinic.org/bio/10290605.html

Thank you JAB, I'll look into this.

Iris L.

I just remembered today, two weeks later, that the neurologist said that my MRI showed areas of vascular ischemia and that these areas had increased from the MRI done 5 years ago.

Does anybody know: Does vascular dementia progress the same way Alzheimer's dementia does?

Iris L.

Iris, I have the impression that the progression of vascular dementia is like Alzheimer's in that there are general clusters of symptoms that tend to move in a particular pattern. With both, the fine details are different for each of us.

Please, somebody who knows what they're talking about -- please give Iris a good answer? Mine looks wrong, but I can't think of what I think I know.

My MRI showed that ischemia thing too, mostly related to my frontal lobes, I think. Not that I have vascular dementia. Actually, once again I don't seem to know what I'm talking about. I think I'll give my noggin a rest.

Hi, Iris. I had a friend ask me about the stages of vascular dementia, and how they differ from the stages of Alzheimer's, so I can tell you what I found while researching her question.

Most web sites I've seen say that the progression of vascular dementia (VaD) is similar to that of AD, in terms of the symptoms that may develop. However, several of them note that, "...while AD is marked by a gradual worsening of symptoms, vascular dementia usually follows an irregular, stepwise pattern, with long periods of stability before a sudden worsening. Gait problems frequently are noticed in the beginning stages of vascular dementia, unlike AD."

Several sites described quite a few different subtypes of vascular dementia; presumably, the pattern of decline would be different for each. One of them says that the step-wise progression does not necessarily hold true for all types: "Cognitive impairment, acutely or subacutely, after an acute neurologic event with a stepwise progression is a typical history suggestive of vascular dementia. However, this classic history is usually observed with multi-infarct dementia and may not be observed with lacunar state."

I found one recent study that followed the symptoms of more than 150 AD and VaD patients, and found some distinct differences at all stages. Only the abstract is available for free, but the senior author sent me the full paper, which I can email you if you'd like. I've summarized the findings below.

Chan M, Lim WS, Sahadevan S. Stage-Independent and Stage-Specific Phenotypic Differences between Vascular Dementia and Alzheimer's Disease. Dement Geriatr Cogn Disord 2008;26:513-521.

First, please note that the results are for statistically significant differences between VaD and AD patients. As we all know, dementia patients can vary widely in their symptoms and the way their diseases progress. So the following should be thought of as trends, or averages.

Also, VaD and AD might be visualized as more of a continuum, rather than two completely distinct dementias. Cerebral infarctions commonly co-occur with AD changes in the brain. These researchers did not include any patients who were considered to have a mixed VaD/AD pathology. They evaluated 343 patients who had been given a primary diagnosis of VaD or AD, but only included 116 patients with AD and 103 with VaD in the study, the others not fitting clearly into the diagnostic categories they had rigorously defined.

For staging, they used a Clinical Dementia Rating (CDR) scale, and divided patients into very mild, mild, and moderate-to-severe stages. Most of the evaluation criteria are readily understood from the terms they use ("apathy", for example.) The indices for activities of daily living that they used are not: BADL looks at 5 basic, self-care functions, while the IADL scale measures more complex functions such as housekeeping, shopping, handling of finances and telephone use.

VaD patients are more likely than AD patients to display certain "core criteria" (which are used in making a diagnosis): sudden onset of illness, duration of symptoms less than 6 months, stepwise course of progression, prior history of strokes, and focal neurological signs, and symptoms. With the exception of stepwise course, these were significantly different between VaD and AD groups regardless of dementia severity (i.e., were independent of stage.)

Differences in certain "non-core" criteria were dependent on stage:

Very mild stage: VaD patients were more likely to display apathy than AD patients. AD patients were more likely to display impairment in delayed memory.

Early stages: Loss of insight, apathy, and difficulties with word-finding and category fluency were more common in VaD subjects. VaD subjects performed better in delayed memory and recognition memory than AD patients.

Moderate-to-severe stages: VaD patients were more likely to experience depression, and had more physical problems (urinary incontinence, parkinsonism and gait apraxia) and functional problems (especially BADL) than AD patients. (Other researchers have noted that motor performance alone accounted for the significant difference in BADL. In the more advanced stages, where both types of dementia show extensive cognitive decline, physical factors would exert an overriding influence on any discernible differences in functional status.)

Iris,

Maybe you can find someplace that can do a Qeeg. A good analysis can point to problems that are not evident on MRI and other images.

Here is a research report on using Qeeg to discriminate depression from dementia.
http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0004-282X2004000100008

The study showed a stark differential between the two conditions.


You might check with BCIA.
Here is their web address to search for practitioners.
http://www.resourcenter.net/Scripts/4Disapi6.dll/4DCGI/resctr/search.html?

You would want to call those with both Ph.D. and EEG criteria and ask about differentiating between dementia and depression.

Alan, JAB, and Mark,
Thank you all for responding. Right now I'm staring at the message board speechless. I'm overwhelmed by how much there is to look into in my case. And it seems like it's up to me to look into things. I would be happy to get a specific diagnosis and a specific prognosis. Am I expecting too much? I feel honored and blessed to have message board-mates who are interested in researching these complicated problems. And you can also recall the information when you need it. That's impressive. If you have a great filing system, that's also impressive.

JAB, I would appreciate it if you would email me the full article. My email is rlewis428@aol.com.

Mark, I didn't know biofeedback had a place in dementia. Do you have direct experience with it?

Tomorrow is my birthday. I'll be spending it at an appointment with a geriatrician. I'm trying to get soom coordination in my medical care with someone who won't tell me there's nothing wrong with me. (I know there's nothing wrong with me personally but I know medically there is.)

Thanks again for your responses. I'll let you know what happens at the medical center.

Iris L.

Good luck today Iris at your Dr's appt.!! Please let us know what you find out.
Marcia

Sent the article, let me know if you don't get it.

HAPPY BIRTHDAY!

Iris,

I have not done any biofeedback or neurofeedback because I do not have the funds. It takes a serious commitment financially.

But, I have had Qeeg testing done multiple times. I have had psychologists try to say my cognitive and memory problems are psychologically caused. The Qeeg shows that they are organic problems. The repeated Qeegs have all shown the same problems.

The main value of a Qeeg can be as simple as validation of your symptoms and causation. It can sometimes help with medication issues if the practitioner has enough Qeeg background.

I was assessed by one of the pioneers in Qeeg and he was amazed at how functional I was considering the amount of dysfunction the Qeeg showed.

Qeeg exams are not cheap but sometimes you can get insurance to pay, especially if you can find a Qeeg clinic that has an MD on staff or available by referral. Some clinics know which MD's will refer for a Qeeg exam.

Good luck with your search for help.

Dear JAB, Thank you for your sending the email. I did not attempt to download the actual document because I can't open up my AOL software. I just started working with Verizon broadband last month. I'm working with AOL technical service to fix it.

I spent the morning with the geriatrician at USC Keck School of Medicine. He listened to me and made out a plan. He was positive, not negative and dismissive like the other internists I have seen.

I was exhausted when I returned and slept 5 hours. I'm still tired. I'll try to post more tomorrow.

Iris L.

Iris, I am so happy to hear you've found a good doctor. That can make all the difference in the world! He sounds like my husband's geriatrician.

I'm having trouble with my computer. I have to take a break from posting for a short while.

Iris L.

Iris, congratulations on finding that doctor. He sounds like a keeper. What's also useful, I think, is when you find a great doctor, to switch specialists to doctors that he likes working with.

After a day like that, it would take me at least 2 full days of rest before I felt back to where I was before the stressor.

Iris L,
Belated Happy Birthday!

Hope you are feeling stronger soon.

Please, post when you're up to it.

We're here.

Dear JAB and Lisa,
Thank you for the birthday greetings.

JAB, thank you for sending that long article. It took me a while to download it because I could not access AOL for a few days. I read it today. Unfortunately, my reading skills are such that I can't make much sense of it. Nevertheless I will keep it with my other articles. Thanks again for the information.

Iris L

Iris, found a web site that talks about the dementia symptoms that can be caused by lupus.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutaffe
cts.aspx?articleid=102&zoneid=17

It appears that there can be vascular involvement, but it is NOT the same thing as vascular dementia.

Dear JAB,
Thanks for the research and the link. I have two doctors' appointments today, cardiology and internal medicine.

Iris L.

How did your Dr's appts. go today Iris? I do feel a special bond since you used to live in this
town that I have been living all my life. But just not that, there's something more. Maybe the fact that we both live alone and our own caregivers?
Whatever the reason, I (and all of us on this site want to know)
How are you doing after your appts.?
Hugs,
Marcia

Dear Marcia,
Thanks for asking about me. I'm very upset because I'm getting the run-around. Two years ago I complained to my internist that I was having trouble functioning, and I was advised to get a hobby. Yesterday, with a different internist, even though still complaining of trouble functioning, I was again advised to get a hobby! These doctors have no concept of what memory loss means to patients. This internist said that because I can relate my history and that I don't get lost driving in my own neighborhood, I seem OK to her. I'm not like the memory loss patients she sees, which I'm sure are mid to late stage AD patients. She doesn't realize that there are different stages of memory loss. At an earlier visit I told her I needed to know what's going on with me so I could make plans, and she asked me what plans did I need to make. There are a multitude of legal, financial, housing, and relationship plans that need to be made when memory loss, from whatever reason, is in the picture. I feel like I'm back where I was two years ago, but my life is two years worse.

The cardiologist I saw yesterday didn't have much to say, other than don't eat so much and go swimming and come back in a year.

The neurologist I saw last year said I didn't have to come back until after I saw the infectious diseases doctor he wanted me to see to check out Epstein Barr virus. That won't be until after August, 7 months since I last saw him.

The neurologist I saw at USC Medical Center's Memory Assessment Center said I should have cognitive rehabilitation, referred me to two places--one a memory group for seniors run by the YMCA, the other a 2 year rehab program at a community college for brain injured patients 30 miles away. She said if these don't work out, I should have no problem finding something else, because I should know how to plan. Even though the neuropsychological testing showed that I have difficulty with executive functioning, meaning I have difficulty planning. In other workds, the memory assessment neurologist says I should have no trouble doing something the neuropsych testing says I have trouble with!

My rheumatologist also wants me in the water; she prescribed water exercises and a medication for muscle spasms, even though I don't have muscle spasms.

The only doctors who are helping me are the endocrinologist and the gynecologist. The endocrinologist says I don't have diabetes and the gynecologist says I don't have cancer. However the gyn did send me a bill from my appointment 4 months ago because for some reason my insurance company refused to pay any of his bill. I have a social work intern who is supposed to help me manage my money. But she doesn't understand medical insurance, so when I have a conflict with my insurance company, she is unable to be of any help. I'm left to figure out things by myself, although much of the time I can't. The conflict I had with my insurance company from January is still unresolved. I needed help filling out the appeal form. I told her part of her job as a social worker is to help patients straighten out insurance conflicts. Or at least refer them to someone who can help them.

The geriatrician I saw last Friday, on my birthday, at least listened to me and didn't jump to any conclusions, like I'm a hyppochondriac.

So, Marcia, to answer your question, how am I doing? I'm trapped in a maze with only dead ends. My life is in chaos and I can't get anyone to help.

Iris L.

Iris,

I am sorry for your struggles.

At the risk of sounding like those who have dismissed you, I want to tell you about a time in my life.

In 1981, I was newly married, my wife was pregnant, I was attempting to sell my business, selling my house, and moving to a quieter environment where we were buying our dream house.
The dream house turned out to be a nightmare instead. We attempted to sue the builder for the massive deficiencies in the house only to find out that he was already being sued by the other 19 families who bought a home from him. We were number 20 and he was threatening bankruptcy.

To shorten the story, we ended up losing almost half a million dollars of cash and equity. I was without any financial resources to continue my entrepreneurial endeavors and fell into a deep depression. My symptoms could be easily labeled dementia. I could not track thoughts, plan, organize, or do any of the things I had done so successfully for many years.

I was directed to a psychiatrist by a chiropractor whose husband was in the same state when they lost their dream house in a mud slide.

This psychiatrist practiced ortho-molecular psychiatry. This is the practice of correcting the chemical pollution the brain undergoes when it is overwhelmed with struggles. This is done with selective food and chemical avoidance and by adding supplements to the diet to help the brain clean up the toxins and heal.

By the time I found this doctor, we were expecting our second baby. I did not know how I was going to handle another C-section like was needed for the first baby.

Needless to say, over a period of 8 weeks that included vast blood lab work and weekly B-12 injections, I became a new man. Actually, my old self.

I can't say that this will help you, but when I fell off the health wagon, many of my symptoms returned, although to a much lesser extent.

I now know that I must keep my brain properly fed. Just a week of missing some of the B vitamins I take daily and my wife can tell a difference. I no longer need the B-12 shots. I take oral B-12 instead. Some people do not absorb B-12 orally so they need the shots.

Here is a link to some information. The dosages are much higher than I took but as it states, everybody has different needs.

http://www.newmediaexplorer.org/sepp/2005/11/07/nutrients_cure_mental_illness_orthomolecular_psychiatry.htm

Doctor who practice ortho medicine can be found at
http://www.orthomed.org/resources/resources.html

Hope this is helpful. The stories in the article linked above are inspiring.

Thaanks Mark, you are an inspiring and encouraging voice in the wilderness. I spend much of my time searching for information on the internet. I do believe in supplements. I would like to find medical help that is nutritionally oriented instead of only drug oriented. I'm drained right now because I've had such bad experiences. But I have to keep on, because if I don't look for help, who will?

Iris L.

Iris,

There is an MD with offices in Palm Springs and Encino who does ortho medicine. She is listed on the orthomed link.

Update:
Yesterday (Friday April 24) I had an appointment with the geriatrician at USC Medical Center. He used the "D" word, dementia, definitely; not pseudodementia. He talked to me about the progression of dementia, and suggested that I get the power of attorney done and think about moving closer to family. He's the only physician taking my cognitive problems seriously.

On the other hand, the neurologist seemed to imply that if I treated the depression, the (pseudo)dementia would resolve. She said I could not be seen by a geriatric psychiatrist because they see only patients over 60 (I'm 59). My understanding from what I have read on these message boards is that it is best to see a physician who treats dementia patients as a big part of his or her practice. I'm still going to look for a geriatric psychiatrist. For too long my cognitive problems have been ignored.

So far I don't have a definite diagnosis but I do have a cognitive deficit and I believe it is progressing based on my functional losses in reading and financial skills. Yet no doctor ever asks me how I'm doing in these areas. These are the things I'm having trouble with. I can dress myself, and I can drive. But I can't handle my finances and I can't keep up with my mail and my reading.

What anxiety I feel comes from feeling my abilities slipping away and nobody caring. My close friends still thimk I'm having a pity party, so I don't discuss this with anyone in person. I only discuss this online because I know you all understand. And I know you can be encouraging and not criticizing.

After years of denying feeling depressed, I now feel depressed. I'm trying to fight it.

Iris L.

I am confused. What does the doctor mean by saying a 59 yo person cannot be seen by a geriatric psychiatrist because she is not 60 yo yet.

Is there a magic transformation that takes place on our 60th birthday that results in a mark on our forehead that says "geriatric qualified."

I have said this before. If your doctor dismisses you, dismiss the doctor.

That doctors logic sounds like many others. Everything has to fit in one of the cubby holes designated by the ruling authority. Nobody has the sense God gave them anymore.

Maybe if we live long enough, only those with dementia will have an excuse for their behavior. The rest will have idiopathic pseudo-dementia. I think it used to be call being an ignoramus.

Fortunately, ignoramus syndrome is only spread by mutual consent. The doctors and others decide they do not want to learn or think outside the box any more and their brains atrophy.

Hold your head high. Our dementia has a medical causation beyond our control. The doctors and other ignoramuses have chosen to be afflicted with ignoramus syndrome.

What a country.

But I digress.


Iris, keep looking. There still are a few doctors who know how to think outside the box. They keep their heads low because the insurance companies have a bounty on their heads for not following the rules.

Iris, you make sense to me, and I think everyone here.

I tend to hate, yes hate, doctors that act like there's organic, legitimate problems we can have, and that there are psychiatric symptoms that don't warrant their attention. That is pure incompetence on their part.

I've had the fantasy of getting a time machine, and tracking down the idiot who first came up with dividing brain disorders into organic and psychiatric. There are just problems, and they all deserve equal respect and treatment.

I think it is the insurance companies that like to label organic vs psychiatric. They often have limits on psychiatric payments for treatment.

The DSM-IV keeps a listing of clusters of symptoms and calls them diseases just so the doctor can get paid for treating them. It's all about the money flow. If you see problems with something, follow the money trail and you will find someone trying to make a buck without benefiting the customer.

I suggest we lobby for merit pay for health care providers. The less they help their patients, the less they get paid. If they do not have enough knowledge to help the patient, they should not get paid for seeing the patient.

I don't pay the mechanic when he does not fix my car. It should be the same for doctors.

How ironic that the people with dementia have more sense and more clarity than the "educated" types!

Thank you Mark and Alan for giving me some straight-forward grounding in a sea of confusion. These boards are the only place I can get some positivity in my life about this puzzling condition. I'm very appreciative of the two of you and everyone who posts because without you I'd be struggling and suffering alone in the wilderness of ignorance, mine and others.

Iris L.