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Don't know where to turn
Posted: Saturday, July 14, 2012 3:47 AM
Joined: 7/14/2012
Posts: 55

I get lost.  I don't recognize routes we have repeatedly driven over.  I had to mark the burners F and B after I set fire to a cutting board (plastic) when I turned on the wrong burner.  Several times I have burned my dinner because I forgot I was cooking it.  I have also found "dinner" left in the microwave the next day - because I forgot I had put it in there.  And yes, I have been known to forget to eat.


I have to line up all my ingredients pre-measured to cook, and sometimes I still leave stuff out.  But at least it stops me adding the spices in 2 or 3 times.  I can read the recipe over and over and still miss something, usually something important.


I am forgetting words.  I often cannot complete a thought.  I mispronounce words that I've known for years.  I used to have a huge vocabulary; no more.  Sometimes I cannot remember the word I want so I have to describe what it does or what it looks like, and sometimes I can't do that either because I can't remember the words I need to describe the word I want.  Lately sometimes I don't even recognize a word when I see it - like right now I can't remember what "ambeer" means, nor why I should want to remember it to start with.  My conversation is often full of fits and starts as I struggle not only with words, but concepts, or I forget altogether what I was talking about and stand there looking stupid.


I don't recognize people.  I can't remember names.  I've forgotten the names of everyone I've met in the 2 years I've been here except for just a couple of people.  It took me over a year to remember my son's GF's name, and I'm still not sure I remember it correctly.  I also don't know what she looks like despite (according to my son) having met her several times, including having her over here for dinner at least once.  My son has a couple of friends who live across the parking lot from us, same apartment complex; I spent 4 hours in their home awhile back and cannot tell you which building they live in, let alone which apartment.  I also have no idea what they look like.  My son says his friend's wife greeted me on the bus the next day (this was when I was still trying to ride the bus) but I did not recognize her.  I greeted her back and talked inanely but had no idea who she was until my son mentioned that she had told him she had talked to me.


I can't remember appointments.  I can't follow time.  Sometimes something I think just happened, actually happened weeks ago; sometimes something I thought happened a long time ago actually happened a few days ago.  Sometimes I don't remember an incident at all.  My son says he tells me things and a few days later I have no remembrance of it at all.


I had to stop all my magazine subscriptions because I can't follow them anymore - Scientific American, that Archaeology magazine I've forgotten the name, I can't even manage National Geographic anymore.


I drop things and have difficulty holding on to things.  I fumble a lot.  I can't open a jar by myself anymore.  My balance is shot - it wouldn't be safe for me to try to ride my bike.  I have to walk with a cane and have difficulty with my balance especially when getting up or walking down steps, but also on flat surfaces.


I cannot remember my son's phone number at all, and I frequently forget my own phone number.  Usually I remember it eventually - so far.  Sometimes I forget my address, but I can usually remember that eventually too, except sometimes the zip code.  More and more I have to look that up.  Or count on it being in the autofill if I'm filling out a form on the computer.  I've had to abandon Internet accounts because I can't remember the password OR the login name.


I have not been able to drive in 5 years.  After over 2 years living here, I still do not recognize the routes to most places.  When I was still trying to ride the bus, I would often get confused, get off at the wrong place, and then have to call my son to figure out where I was, by describing buildings to him.  Every time it turned out I was in some place where I had been before, or at least been by, and should not have been so lost and confused.  I stopped trying to ride the bus the 3rd time I fell trying to get on.


I can't remember appointments.  I've been battling with the disability bus service for almost a year because the person keeps "losing" my application.  I can't remember or process well enough to follow through consistently enough to get her to actually process my application.  I'm on the third go-round with this - I'm going to lose.  I can't remember well enough to push this through.  In the meantime I've not been able to get to physical therapy in almost a year.  I don't remember the name of the dentist I've been seeing here for 2 years, nor what she looks like, although I do recognize her assistant when I see him.  I can't describe him to you though.


This past week - or two - I had to reorganize the cabinets to make it easier for me to find things, and to get rid of stacking things because I can't lift heavy stacks.  It took me, the person who designed and built her own house (as in with my own 2 hands), THREE DAYS to figure out how to reorganize 2 over the counter cabinets, 2 drawers, and 2 floor cabinets less than 12" wide each.  Then when the stuff started showing up, I couldn't read my own chart/blueprint for how things were supposed to go.  I was in a panic for hours.  I finally gave up and started over.  Now I have stuff I don't know whether I've forgotten where it was supposed to go, or if I never should have bought it in the first place.


I know this is long.  But I am starting to get desperate.  I go to my doc and she gives me a MMSE, which I pass because you have to be almost a vegetable not to pass it.  I passed it when I couldn't remember what season it was, what the name of the hospital was, or what floor I was on. I know this because I asked my son afterward.  There were some other things he said I got wrong but I forget what they were. Heck, my Dad passed it when he had full blown dementia/alzheimers.  They give me a balance test, I almost fall - they tell me I'm fine.  They do a word test, I can't get half of them (where I USED to get ALL of them), I'm still fine.  I can't remember if it's winter or spring -- still fine.


I'm 53.  It is not ok that I can't remember what season it is, or to check the computer if I can't remember what day it is.  I used to ride 100 to 150 miles per week on my bike; it is not ok that I can't even balance on it anymore.  It's not ok that sometimes I'm as much as 3 months off when I'm trying to remember the date.  I can't remember my own son's phone #, and I frequently forget my own and have to look it up - which I can't do on my phone anymore because I can't remember how to. 


I'm told it can't be Alzheimers or any kind of dementia because I'm too young, and I "pass" the MMSE.


Well it's got to be SOMETHING.  I don't know what to do, and I'm not smart enough anymore to figure it out and tell my doctor what to do.


I'm getting desperate.  Sometimes I can't even remember my own age, I have to calculate it, and I have to use a calculator to do that.  Did I say my IQ used to be like 145 to 150?  I've asked about an IQ test and my doctor says it won't show anything.  That's not what I remember about IQ tests as diagnostic tools.  I don't remember the details of how to do it - but I still remember enough to know they're not USELESS.


I'm desperate, I have no idea what I"m supposed to do, and things keep getting worse.  Sure, they could be a lot worse than they are right now, but I have a really strong feeling that they're going to keep getting worse until they ARE a lot worse.


I just don't know what to do.  Am I being you know - overly worrying?  Is this kind of stuff NORMAL for someone only 53?  I don't think so, but what am I supposed to do about it?

Posted: Saturday, July 14, 2012 5:38 AM
Joined: 4/19/2012
Posts: 83

Hi Zen,

I am 57 and also had a full intelligent life...and it still is very good because I have been able to slow down and sort through most of the same symptoms you have discussed. I was around 50 when it started and it took 3 years for the drs to order a neuropsych test. That confirmed all of what I was going through. It still took time to get to a dr that knew enough to rule out disease processes and get a longer neuropsych to show more deficits. I also had cogitive training to help me function safely on my own. My dx is fronto temporal dementia. other people on these boards will be more able to guide you towards what kind of help to get. I just wanted to say, yes, it all sounds familiar.


Posted: Saturday, July 14, 2012 9:51 AM
Joined: 7/2/2012
Posts: 153

Hi Zen, Welcome to the boards, I'm sorry you are having these problems but you are definitely in the right place.

When I first came to the boards I had the same desperation that you are feeling, everyone here was amazing. The first thing they told me is what I'm about to tell you.

First of all BREATHE,  take a deep breath and try to relax.


Your symptoms sound very much, almost exactly like me.  It's really scary and really frustrating, I can completely sympathize with what you are going through.

You will be told to see a doctor to start getting tested,  That is very important.

You should do that. Thats step one.  Next, book mark these forums so you can find us often, You can be here as much or as little as you like, check here often, look for private messages at the top of this page labeled as "inbox" those will be one on one messages from people that want to "connect" with you,  if you use the computer much it is known in other sites as a "friend list"  There is also a "connections" tab at the top next to inbox where you can see your connections (friends)  I will send you a connections invite as soon as I am finished with this post.

Please feel free to ask questions,  you will get a lot of really good advice from everyone here, 

This is a great place to be.

Posted: Saturday, July 14, 2012 11:00 AM
Joined: 3/21/2012
Posts: 439

hi zen - i also add my welcome to you, although, like the others, i am sorry for the reason that you have to be here.  so much of what you said sounds like me and what i've been through and what i'm giong through.  i bet you'll be surprised to find that there are others on this board who are thinking the same thing!  i've said this a lot on the forum, but i think it bears repeating.  when i first began to suspect something was going awry, i was "only" in my early 50's also.  for me, it was more than walking into a room and wondering what i came in there for; opening the refrigerator or cupboard and wondering what i was there for.  doing those kinds of things never bothered me because most people experience that.  but then i began to look at common objects: buttons, spoons; combs, etc., and wonder what they were and what they were used for or look at them and have a total brain "black out".  when that happened often, i began to think i was having petite mal seizures.  i also had/have trouble with word finding - doing what i call "bringing words down" from my brain or finding the right word.  my forgetfulness increases all of the time.  and i also have personality/behavior changes.


i first approached my pcp about it and he was like...."well,if you really want to investigate this, i'll give you a referral for the cognitive eval".  i was miffed about his blase' attitude, but, since then i really think that it, too, was because of my younger age (early 50's).  i did very, very poorly on my cognitive eval.  however, right after that i had a hearing test and discovered that i had a hearing loss that requires me to wear 2 hearing aids.  i had the cognitive eval repeated and still did poorly, however, not as poorly as the first because i could hear the words and instructions better.  but poorly enough that i then had a neuropsychological evaluation and i did very, very poorly on that.  the neuropsychologist at that time diagnosed dementia, nos.  let me add that right before the neuropsych eval i referred myself to a  neurologist who, i am happy to say, took me very seriously.  i had the gamut of tests to rule out anything reversible such as infection, illness, vitamin/mineral deficiency, cat scan, brain mri, 3 lumbar punctures (that's for another episode!).  based on all of the information available the neurologist, also, diagnosed me with dementia nos. that was in 2007.   he then put me on aricept and then a combo of aricept and namenda.  the neurologist had a suspicion and referred me to a neurologist in another city, how saw me, ordered a spect scan and, based on those results, diagnosed me with frontotemporal dementia. that was in 2009.  i "retired" from my job of 34 1/2 years in 2010, applied for and was granted ssdi and, here i am.


i must also add that the frontotemporal dementia (ftd) has other issues too, such as behavioral and personality changes and terrible, terrible headaches as a result of a lot of concentration, language processing,etc.  for these things i see a psychiatrist who has prescribed depakote er.  this keeps me pretty well balanced, although there are times, like now, that i am "out of balance".


i also attend receive weekly cognitive therapy with a speech therapist who also gives me strategies for home and attend individual psychotherapy two times per month.  i really, really need that.


so....that is MY book! 


as you will see from everyone you hear from, you are NOT ALONE!  this is a great place to come to find that out and to receive great resources.  take care, and don't forget to breathe, breathe, breathe!

Posted: Saturday, July 14, 2012 12:01 PM
Joined: 5/7/2012
Posts: 97

Get evaluated as soon as possible by a specialist in dementia at your state's medical college. You should get a lot of options from the people on these boards. Nomemo is right..  Take a deep breath and try to tackle one thing at a time.  You can do it.

Posted: Saturday, July 14, 2012 12:15 PM
Joined: 5/7/2012
Posts: 97

To find a memory disorders specialist, google memory disorders clinic (and your state).  This will usually be located at your state's medical university.

Iris L.
Posted: Saturday, July 14, 2012 1:39 PM
Joined: 12/15/2011
Posts: 18210

Welcome to our online support group, zen,  We are here to support you in whatever way you need to deal with what you are going through now.  Now that you have found us, keep coming back for advice, and just to have people who understand, listen to you.  That is very important, because so often our concerns are brushed aside.

I developed memory loss in 1987, at age 37.  They told me nothing was wrong. One doctor even said I was malingering, which means faking, for what reason, I don't know.

I was eventually diagnosed as having lupus.  I was told my memory problems were related to lupus, as many lupus patients do have memory complaints.  My complaints persisted, and worsened. 

An Alzheimer's disease educator encouraged me to insist that the neurologist  take me seriously.  Once the full evaulation was completed, I received a diagnosis of cognitive impairment not otherwise specified.  This means I don't have Alzheimer's disease, and my impairments are likely due to lupus. I was prescribed Exelon patch and Namenda, which are helping me a great deal.

Before I began the medications I had the same language difficulties you describe.  I also had difficutly with the stove.  Some wonderful caregivers on this board advised me to stop using the stove.  I did not want to stop, but I took their advice because they seemed to know what they were talking about.  I'm glad I took their advice.  Since I have been on the Exelon and Namenda, my language has improved, and I am able to return to my prior functioning.  I can use the stove, but only briefly, as long as I stand by it.

I mention this to give you hope, zen.  I don't know if you have early onset Alzheimer's disease or not.  There are many medical conditions that can cause the problems you are having.  You need a thorough medical evaluation by a dementia specialist to rule out treateable causes. 

If the cause is indeed EOAD, you need to begin treatment as soon as possible.  Treatment can return some degree of functioning to your life.  The goal of treatment is to prolong the early stage so you live at home and interact with your family for a longer period of time.

Look for an Alzheimer's Disease Research Center or a memory clinic.  You can google or you can call the 24 hour Helpline number.  They will be able to refer you to a center near you. They will also send you a packet of information.

If you can, get a copy of "The Alzheimer's Action Plan" by Dr. Doraiswamy and Lisa Gwyther.  This will explain the diagnostic process in detail.  You can find this book at your local library.

Look over the main web page,, and read the 10 Warnings signs of AD. 

When you go to your appt, I strongly urge you to take someone you trust to the appt with you.  You need someone who can help you remember what the doctor has to tell you. 

That's all for now.  You have received much info and advice from our members.  It's best to take things step-by-step.  Don't let yourself be overwhelmed. 

Don't hesitate to post whenever you have a question or a concern.  You are here with us now.  You are not alone.  We will be along with you.

Iris L.

Still Zen
Posted: Saturday, July 14, 2012 2:46 PM
Joined: 7/14/2012
Posts: 2

I should have mentioned, I was working on my doctorate when all this started, so - no insurance.  I have had what I feel was not a very serious "cognitive test" by a neurologist.  It was essentially the MMSE plus more of the same.  They did the number memory thing, the word memory thing, which I did abysmally on but they still said it was fine - how can it be fine when I used to get ALL of those? They did a balance thing but even though I almost fell (i don't remember whether I caught something on the wall like a handrail or if someone caught me but I remember losing my balance) and they said that was fine too.  They did the clock thing and the thing where you copy a picture.  They did trails a or b or both, I'm not sure.  I had trouble with one of those, I'm pretty sure the more I think about it they gave me both.  I had to pause between each movement and repeat out loud what I was doing next - and that was "fine" to.  They said nothing was "indicative" of anything.  They didn't do any evaluation of motor coordination, only a walk down the hall or across the exam room, I forget which, during which I lost my balance.  This cost us $900 cash.


The local university says I don't qualify for charity care because I own my own house (remember the one I built myself) and because I am not living in it it is not my "primary residence" - well I'm not living in it because I can't live on my own, I have to have a caretaker, so ... catch 22.  I've been told by hospital administration to sell it and give them the money.  It's in a very rural location and the market for sellers isn't good even if you have a showcase home in a nice location.  THIS is 5 miles down a dirt road and hasn't been lived in for over 7 years.  Interior work wasn't finished before my Dad fell and I had to go take care of him.  So - not really all that saleable.  To date I owe them $20k or more.  I'm not sure.


I had an MRI which apparently also didn't show anything.  The neuro guy told my free clinic doctor that his tests don't show anything and my symptoms are not


Dang it I can't remember the word.  Almost had it.  They don't all match up with anything.  I thought stuff like Alzheimers didn't show up on MRI.  I have a friend who has MS who told me you could have that and it may not show up on an MRI for years.  Because I have 20K or whatever it is in outstanding hospital bills (I am totally unable to work, hadn't been working because I was in grad school, and my son is in grad school himself and is not allowed to put me on his insurance even though I'm legally his dependent).  Doctors want to be paid up front.


I was 3 years into a doctorate in clinical psychology, I KNOW there are more subtle tests for cognitive impairment than just the MMSE and some picture drawing stuff and reciting words and numbers.  Oh yeah and I had trouble with going back from 100 by 7s.  I've been PRACTICING that and I still have trouble doing it.  But it was still OK, according to them, for a 53 yo woman with and IQ (former IQ) of 145 or more to not be able to count backwards from 100 by 7s without having to stop and practically count on my fingers.  I'm pretty sure I didn't even get it right but I'm not sure, I don't remember any more.  I know there were several things my son told me I got totally wrong during this test - but I'm still OK according to this guy.


BTW I had to start a new account, this is still me, the original poster.  Because apparently a site for people with Alzheimers or other memory impairment has the password manager disabled and I've already forgotten what the password was.  In fact I've forgotten the password for this account already - I meant to write it down this time but that's one of the things I do.  I start to do something, forget what I'm doing or why, then go on to something else.  Sometimes I just blank out and can't remember what I'm doing at all so I just sort of spin my wheels and dither for 10 or 15 minutes, or just sit there looking blank, until I can figure out something else to do, which may or may not have anything to do with what I set out to do in the first place.


Anyway, they give me only tests that would show the worst impairment.  I'm not so bad yet that I would flunk a MMSE.  I'm not so bad yet that I can't look out a window and tell whether it's day or night.  I do wake up sometimes and if it's dark I'm disoriented until I figure out whether it's AM or PM.  I just don't see what good it does anyone to only give the tests that would only show the worst impairment - isn't that sort of like waiting until you actually go into a diabetic coma to test for diabetes?  I know there are tests that show more subtle impairment because of my clinical psychology background - but I can't remember what they were, the names, or what was in them.  Plus, I think some of them, to show progressive decline, you have to have a baseline to start from - and the longer they wait, the lower my "baseline" is going to be!  Can't an IQ test be used as a baseline?  I was already impaired on the last one I took but nobody took me seriously then because it was still showing me at something like 135 or 140 (I think it was 140 something verbal but only 135 overall).


If I could remember which tests I would ask for them.  In fact about 4 years ago I had asked one of my cohort to give me some of these tests because I felt like something was wrong back then and wanted to get results before I got familiar with the tests as part of my training, but it never happened because things escalated so quickly with my dad, and then my health collapsed (I had to have some surgery).  Now I can't remember the names of the tests.


Oh,  know, consistent.  They neuro guy said all these symptoms aren't consistent with anything - the loss of balance, the memory and focus impairments, the cognitive decline, the muscle weakness, the exercise intolerance.  Does every symptom have to be due to ONE thing going wrong?  Couldn't we at least look at the cognitive stuff on its own?  If you have a cold, does that mean you can't have a broken arm, too?  Does it make sense, what I'm saying?


I'm not in a position because of lack of insurance and lack of money to be doctor hopping.  I say I have a doctor at the "free" clinic, but it's not really free, it's only cheap.  There are no free clinics anymore.  My son is so stressed about money, and all the baggage I've dragged into his life, he's behind on the stuff he needs to do for himself.  He's supposed to be finishing his dissertation and applying for academic jobs now, but because of me he's almost a year behind in that process.  He's just now getting papers out to be published and without published papers he won't be able to get an academic job.  That is my fault.


I swear, if I knew 3 years ago how things were going to end up, I'd have taken my student loan money and disappeared in the Bahamas due to a "diving accident"!  And no, I'm not suicidal, I'm just so extremely frustrated I'm almost angry - and angry is not a thing I do often or well.  I wish I would just disappear off the face of the earth and stop being a burden to my son, especially as every doctor I see either tells me there's nothing particularly wrong for me (oh you must be depressed, NO, I am NOT depressed, I am UNHAPPY and unhappy does not equate to depression - you would be unhappy too if this was happening to you!) or yeah there's something wrong with me but they can't do anything about it.


Medical doctors should not be allowed to throw around terms like "depression", they are not trained to really know what they are talking about, any more than psychologists are trained to diagnose heart disease, but they do it anyway.  Anyway.  So the Neuro says I'm OK (which I clearly AM NOT), and the clinic doc says she can't do anything to help alleviate what is going on, though she does seem to accept that something real is going on.


In the meantime now she's focusing on trying to make me believe I have diabetes and this is all due to diabetes.  Explain to me how I can be diabetic when I've never had a fasting blood glucose level over 140, I've only ever even had ONE that was over 100 and that was 108.  Just one, and as soon as she saw that one she labeled me "prediabetic" - ever heard of lab foul-ups?  What about the fact that I am chronically dehydrated to the point where half the time they can't even get any blood out of me, which is known to concentrated glucose in the blood and cause falsely high glucose readings?  Also, it is well known that stress raises glucose levels - think I might be under any stress?


I have 2 years of blood tests with no fasting tests over 140 (diabetic range), only one in the "prediabetic" range, no non-fasting test results over 200 (the highest nonfasting test was 130 I think).  I don't have the symptoms of diabetes, no excessive thirst, no excessive urination, no weight loss (I WISH) I forget what the rest are but whatever they are I don't have them or else they by far predate any even remotely suspicious blood glucose tests. My blood glucose test results have been in the 90s for the past couple of years and that has had her harping at me about diabetes when they weren't even out of range, just because they've been on the high end of normal.  But the thing is she doesn't know what's wrong with me so she has to have something concrete to latch onto, and this is it.  I got a letter from her telling me I was diabetic (in the absence of a single blood test out of range) and we needed to "talk about treatment" - well I looked it up, and as near as I can figure it, given my current test results, the treatment would be ... exactly NOTHING.


Because what do they want?  And I'm copying this from where I wrote it down when I looked into it, it took me days to make sure i had this all right.


I'm supposed to keep my fasting blood glucose between 70 and 130, my non-fasting blood glucose below 180, and my A1c levels below 7.

EXCEPT THEY'RE ALL ALREADY THERE!  And have never exceeded any of those values!

So clearly, even if I AM diabetic, I have to do .... EXACTLY NOTHING ANY DIFFERENTLY.


Right now I have a diagnosis of chronic fatigue and diabetes and an old diagnosis that I don't think was very accurate of fibromyalgia (I have some pain but not THAT much pain).  Chronic fatigue is probably valid as I've been fighting off that diagnosis for over 30 years (at one time they thought I had Epstein-Barr or Lymes, back before they could test for that stuff).  But, as my doc says, chronic fatigue doesn't explain the cognitive decline to the level I've experienced it, or the fumbling or balance issues.  Well that's fine - to me that means there are at least 2 processes at work here.  One is the CF and the rest - if you remove the CF stuff, it seems like I'm left with signs of some kind of Alzheimers or other cognitive impairment.


Oh and the diabetes is just not flying.  You can't have diabetes when your fasting blood glucose is always in the 90s, even with one "spiked" of 108.  As for "excessive thirst" - I have the OPPOSITE of that, and always have.  I'm almost never thirsty, never have been.  If I feel mild thirst it means I'm badly dehydrated.  I'm ALWAYS dehydrated, and it doesn't show up on the blood tests - there are supposed to be "markers" that show you're dehydrated and those always look normal, but yet they can't get a urine sample unless they make me sit there for 4 hours and drink quarts of water, and half the time they have to send me home to hydrate before they can get any blood out of me.  Diabetes would probably actually be good for me, if it would make me thirsty.


Sorry, I think this has got long again, but I can't seem to order my thoughts and say things concisely.


Anyway.  No insurance, docs now wanting money up front, MRI didn't show anything, unwarranted diagnosis of diabetes that I'm having to fight off, more than one thing going on here, chronic fatigue probably accurate due to long history of symptoms going back decades - continuing cognitive decline, increasing number of not exactly black outs, but periods of blankness where I just don't know what I'm supposed to be doing.  And I have no idea where to go from here because I've BEEN to a neuro who I didn't feel took me seriously (he actually talked about holistic medicine, made me wonder if he was a doctor or a shaman). I don't see what good the MMSE is as it is so broad you have to be so severely impaired that the test wouldn't be showing you anything that wasn't already obvious.  Seriously, not knowing where you are, what the season is, or why you are there, and you can still "pass" the test.

Iris L.
Posted: Saturday, July 14, 2012 3:36 PM
Joined: 12/15/2011
Posts: 18210

Still Zen wrote:


Right now I have a diagnosis of chronic fatigue and diabetes and an old diagnosis that I don't think was very accurate of fibromyalgia (I have some pain but not THAT much pain).  Chronic fatigue is probably valid as I've been fighting off that diagnosis for over 30 years (at one time they thought I had Epstein-Barr or Lymes, back before they could test for that stuff).  But, as my doc says, chronic fatigue doesn't explain the cognitive decline to the level I've experienced it, or the fumbling or balance issues.  Well that's fine - to me that means there are at least 2 processes at work here.  One is the CF and the rest - if you remove the CF stuff, it seems like I'm left with signs of some kind of Alzheimers or other cognitive impairment.



Still zen, have you considered that you might have lupus?  I was diagnosed as chronic fatigue syndrome.  In fact, I consulted a rheumatologist for treatment for CFS--after evaluation he diagnosed me as lupus.  I had severe balance problems and walking problems--I thought I had Parkinson's. I had to walk with a cane for about a year until I began treatment for lupus and had intensive physical therapy.  Now I can walk unaided.

If that doctor believes something else is the cause of your symptoms, she should be looking into it.

What you need is the six hour neurocognitive testing done by a neuropsychologist.  The first one I had done the psycholgist did not accept insurance--I paid over $2,000 in cash for the study.  Obviously, that is out for you.

May I ask a question?  Why did you stop working?  Was it because of your health? 

Iris L. 

Still Zen
Posted: Saturday, July 14, 2012 10:22 PM
Joined: 7/14/2012
Posts: 2

I found a lupus checklist thing and I only marked 4 out of 15, I don't think lupus is what's going on with me.  I think the doctor actually may have already considered it but of course I may not remember correctly.


My son goes with me to every appointment so that's taken care of.


There are doctors galore around here, but - no money.  Plus since my GP sent me to a "specialist" already who did basically the MMSE and some similar tests which I "passed", she doesn't feel there is any more to be done on that front, so unless I can come up with a good explanation for why those tests were not enough - no referral.  My feeling is these tests - MMSE, Trails A & B, the thing with the clock, the thing where you draw the geometric figures, the thing where you count backward from 100 by 7s, the word lists and number sequences - only show if you're already grossly impaired.  The last 3 could be used to show decline in functionality if you have a baseline, which would have to come from my past IQ tests, which no one has asked to look at.  I think part of the problem is none of these doctors knew me before so what they may be viewing as "some" cognitive decline assuming I started out with average or slightly above average IQ looks completely different if they understood or believed where I was actually starting from.  Anyway none of these are really "screening tests" in the sense that they would catch you in the earliest stages.  They're tests that show how bad off you already are, assuming that you're already fairly bad off.


Iris, in reality I noticed some sort of cognitive problems in my 30's.  Suddenly I started losing things, a LOT, like once I found my keys in the freezer, and once I found them in my shoes.  I would have blank spaces where I would suddenly sort of "reset" and start talking like the last 5 minutes hadn't happened.  I would have these while driving, and I would get confused and not recognize where I was because it wasn't where I was at before the blank.  I learned NOT to start making turns but just keep going or pull into a parking lot until I could figure out where I was.  During these "blanks" other people thought I was continuing to function normally.  It was as if I continued to process normally, but somebody had hit the "pause" button on my memory so I didn't remember anything that happened or that I did during that period.  I went to a ton of doctors and had a ton of tests and ended up pretty much like you, being accused of faking it (WHY?  It was ruining my life!), being told to see a psychiatrist (you're not sick, you're crazy), and I had one doctor yell at me over the phone when I'd had yet another horrible reaction to a medication I probably shouldn't have been taking to start with, "YOU'RE TALKING ABOUT A QUALITY OF LIFE ISSUE, AND FRANKLY I DON'T GIVE A DAMN ABOUT THE QUALITY OF YOUR LIFE!"


So I quite going to see doctors AT ALL for like 12 years after that.  I even came down with pneumonia at one point and refused to allow them to hospitalize me for it.  I just went home and took antibiotics until it was over.  I literally would rather have died than put myself in their hands again.  So I just developed a whole lot of coping mechanisms and I coped as best as I could.  Eventually continuing as a software engineer became impossible, so I quite, took my savings, and built myself a house in the hinterlands.  Worked as a fry cook, as a transcriptionist, whatever I could come up with.  I went back to grad school.  I didn't exactly struggle, but it was harder than it should have been for me.  Still I managed fairly well - got into a doctoral program.  Then the stuff with my Dad happened and I had health issues of my own that ended up requiring surgery (that's where most of the 20k in hospital bills comes from).  We were blaming most of the latest wave of impairment on the stuff that put me in the hospital, it seemed logical to think that once that was fixed and since I no longer had care of my Dad (he passed away in 2009) I would be able to go back to school and finish my doctorate.  But it didn't work out that way.


So I wasn't working because I was in grad school working on my doctorate, plus taking care of my elderly father on top of that.  Then when I had the surgery and that was all over, it turned out things were NOT better - and they kept getting worse.  I can't work because I can't get around, can't remember what I'm told, can't follow simple instructions, can't work simple equipment - like I can't remember how to turn the volume up and down on my cell phone, which I've had for 3 years and used to know how to do everything with it that needed to be done.  I can still put a new phone # in it, but I can't remember how to work the camera or find my own # on it. 


And this from someone who used to work with aircraft systems, digital communications, radar, and flight testing.


I had my son look at the "10 signs" thing and he agrees with me, I have all ten of them. 


I will try to remember to call the clinic Monday and get the exact tests that they ran and a copy of the report, but I'm pretty sure, as far as I can remember, everything they tested was a test of current functionality aimed at seeing how badly off you are - not actual screening for less catastrophic problems, but instead stuff that would only "show" something if you already had actual full-blown dementia of some kind.  I mean seriously, when you can not remember your name and still "pass" the MMSE, it's not really much use as a "screening" device.  I'm not so far gone yet that I can't recognize that!


I';m going to have to close down my browser which means I won't be able to get back on these boards, since they have disabled the password manager and I forgot to write down my password (again).  I'd have to go create another hotmail account and create another account on here to get back on, since I haven't heard back from the "help" thing yet about the password for the first account. I don't want to do that since its already kind of confusing having 2 identities on here already, neither of which I can get into again what with password manager blocked so it can't remember the password for me.  So until somebody gets back to me about that first account I won't be able to sign on again but I'll read, anyway.


Thanks for encouragement and information and commiseration.  Thanks.

Iris L.
Posted: Sunday, July 15, 2012 12:39 AM
Joined: 12/15/2011
Posts: 18210

Zen, you said you would be eligible for Medicare in a few months.  When you get Medicare, look for a memory clinic.  Ask Care Consultant on the Helpline.  Everything depends upon receiving an accurate diagnosis.  Then you can start treatment for whatever the diagnosis is.


If you still have problems, call the Helpline number and tell them you are a suspected dementia patient and you need help accessing the message board.  They will help you.  The Helpline number is 1-800-272-3900.  Write it down.  It is also on every page of this site and the site.

Do you carry a notebook around with you?  That will help.

Keep checking back.

Iris L.

Posted: Sunday, July 15, 2012 6:38 AM
Joined: 12/18/2011
Posts: 3097

Just a suggestion, but since a lot of what the doctors have told you has been forgotten (per your posts) and your son goes with you to all appointments, he may be a more effective advocate for you in getting further investigation into these problems.


Have you filled out HIPAA forms with your physicians to let him have conversations with your doctors about your medical status?  If not, make sure you do that this week.  Let him have a conversation with your doctor and maybe he can get them moving on looking into this further.

Posted: Monday, July 16, 2012 3:14 PM
Joined: 7/14/2012
Posts: 55

Sorry, I can't get the quote thing to work.  When I try to type it jumbles the letters so you can't read anything.

1) medicare/medicaide - no eligibilty for that, so there's no help there.  Sorry if I gave that impression.

2) Apparently the tech staff are fully well aware that they've blocked password manager, and they did it on purpose for "security" reasons.  I'm pretty sure that sticking a sticky with your login and password bypasses their "security" 100%, don't you think?  LOL!  However being a former software engineer I just went out and got an addon to take care of this for me.  


It's called Roboform and it works in Chrome and Firefox, though I haven't tried it in Firefox.  I find it much more confusing to use than Password Manager but I did get it set up and it is working.  One confusing thing it will do is if you are already logged in to the account, it will show you some confusing screen rather than taking you to the login page if you try to use it to log in again.  So, if you don't end up where you thought you should be after using roboform, you're probably already logged in, so just go to the forum.  I have it set to be the "home" page - it will keep all your passwords and login information in little blocks there every time you use it to save a password.  Then you just hit the "home" button if you want to log into one of your accounts that it is managing.

It has some unexpected results and it can be confusing but for as long as I can use it I will.  At least it works.  There may be something easier out there, I will try to find something simpler to use.

This discussion thingy acts weird too, if I hit return twice it keeps going BACK a line instead, until it finally inserts the blank line I want, plus an extra space, then when I start to type it backs up over the extra space. It also jumps around in the text for no reason I can see.  Really weird!  Anyway, sorry, I'm distractable.

About carrying a notebook:  I keep losing anything like that.


Posted: Monday, July 16, 2012 3:35 PM
Joined: 7/14/2012
Posts: 55

dayn2nite wrote:

Just a suggestion, but since a lot of what the doctors have told you has been forgotten (per your posts) and your son goes with you to all appointments, he may be a more effective advocate for you in getting further investigation into these problems.


Have you filled out HIPAA forms with your physicians to let him have conversations with your doctors about your medical status?  If not, make sure you do that this week.  Let him have a conversation with your doctor and maybe he can get them moving on looking into this further.

Trying again - nothing seems to be working properly today, LOL!
My son already goes with me to all appointments and has for over a year, maybe 2 now?  Not sure.  I can't get anywhere unless he takes me anyway.
Thanks.  At least I'm back on the forums ... LOL!

Johanna C.
Posted: Wednesday, July 18, 2012 1:01 PM
Joined: 12/9/2011
Posts: 13308

Zen:    It may be worth your while to speak to a Care Consultant from the Alzheimer's Assn.  The Consultants are highly educated social workers specializing in dementia that are at the (800) 272-3900 phone number.  When the volunteer answers the phone, ask them to put you in touch with a Care Consultant as your needs are quite complex.


The most promising thing would be, if there was a clinic close to you that encompassed the person as a whole - from the physical to the Neuro and Psychological aspect.  One never knows what is going on within one's body in such a complex situation, and having a "one stop shop" with all the experts in one place, working in tandem as a team, would be a huge plus.  There are some clinics that allow for non-insurance needs, but I personally do not have the information as to their locations.  Since we don't know your city, if anyone here has helpful information, they would not know they have it for you.


If there is a good clinic to accept you, it would be good to start once again at square one with a complete physical workup - head to toe - and let them rule out ALL physcial causes including rare disease diagnoses and then move on to the dementias and Neuro/Psych possible causes.


There are dementias such as FrontoTemporal Dementia and Lewy Bodies Dementia that do not respond to the MMSE the same as AD.  There are many "orphan" or rare diseases that can cause Neuro or Psychological symptoms or a combination of both.  There is also the condition of, Dementia Induced Psychosis which would be superimposed upon the primary dementia - as much as this may be a negative to you, all this needs to be ruled out.


Your diagnosis will probably be a process of elimination and much patience will be necessary to move through the process and so as not to burn out the doctors and other experts.


While they may want to rule out Huntington's, BSE and other rare diseases, it will probably turn out to be something far more simple in it's earlier but evolving stage.


I can hear your frustration and anger through your words and wish there were an easier way for this to be managed, but I don't think the words "easy" or "simple" are going to fit this picture.


I wish you the very best and hope you will be able to obtain a team approach to diagnosis and treatment and that all will go much better for you very soon.


Johanna C.

Posted: Friday, July 20, 2012 2:08 PM
Joined: 6/29/2012
Posts: 75

Iris L.
Posted: Friday, July 20, 2012 8:10 PM
Joined: 12/15/2011
Posts: 18210

Welcome, Hi.Phi.High.  Your post did not come through.  Are you using Firefox?  Our system is not compatible.  Can you use Internet Explorer or Google Chrome? 

Please repost using a different browser.  Feel free to begin a new thread by clicking on "Add Topic" on the Younger Onset Board.  We want to meet you!

Iris L.

Posted: Friday, July 20, 2012 11:32 PM
Joined: 7/14/2012
Posts: 55

Iris I use Firefox with this forum - why do you think it is not compatible?  Firefox is 100% HTML compatible, IE is not, they use lots of IE only fake HTML.
Iris L.
Posted: Saturday, July 21, 2012 12:21 AM
Joined: 12/15/2011
Posts: 18210

Zen our message boards changed systems in Dec 2011.  Since then members have been complaining they could not post with Firefox.  When a new member tries to post and their post doesn't come through, that is the only answer I can tell them. 

If anyone knows of another reason why a post does not come through, please feel free to try to help the new member.  I'm doing the best I can.  I am unable to keep up with the myriad changes that exist.

Iris L.

Posted: Saturday, July 21, 2012 10:19 AM
Joined: 7/14/2012
Posts: 55

OK, I'm making a test post just to be sure - I know I've been using both Chrome and FF, so double checking to make sure posting does work in Firefox


And it doesn't do the weird hopping around in FF that it does in Chrome.


Couple more lines to make sure it properly inserts line feeds, because it doesn't in Chrome


And there's the end of my Firefox Testing.






It did work to post in Firefox, in fact it works better in my Firefox than it did in Chrome.


If you are having trouble with Firefox, make sure you have a newer version - some older versions do not implement parts of HTML5  - actually no browser fully implements the new HTML standards - but later versions implement MORE of it.  I'm currently running the newest Firefox, version 14.

Iris L.
Posted: Saturday, July 21, 2012 1:36 PM
Joined: 12/15/2011
Posts: 18210

Thank you for running a test with Firefox, Zen.  I will tell new members who are trying to post unsuccessfully that they need a new version of Firefox, or they need to contact Admin. 

Iris L.