RSS Feed Print
appoinmet with my mp doc thurs
vrswesley
Posted: Wednesday, December 4, 2013 7:05 PM
Joined: 11/15/2013
Posts: 92


I had the appt already but now I want to find out how much of my dementia symptoms might be cause by anti depression meds that Ive been on for yrs and yrs. ..been doing reseach and found many of my symptoms can be caused by my ad drugs..not skiping the eval just want to talk to my pdoc too.. look at every thing.. seems like a good idea. I will let you all know what dr baker says tommorow.

 

v


vrswesley
Posted: Thursday, December 5, 2013 3:32 PM
Joined: 11/15/2013
Posts: 92


saw my pdoc today, he doesnt buy dementia in any way at all..Im not overly impressed.. but it should be considered good news.. but ive decided to just keep good records of my symptoms, and how often they show..so I can give the list to the neuro,..Im just not sure hes right..I trust him but...this doesnt feel normal..hedidnt really even say it was meds.. so.....I expected him to change my meds.. he didnt i dont think.--didnt see tye prescriptions

 

v


vrswesley
Posted: Thursday, December 5, 2013 4:08 PM
Joined: 11/15/2013
Posts: 92


you know people have asked if anybody in my family has had any dementia...I* had said no.. and Im not actually sure but.. my dad had parkinsons desease....so I dont know..
Iris L.
Posted: Thursday, December 5, 2013 7:06 PM
Joined: 12/15/2011
Posts: 18342


You can check your own medications for cognitive side effects online, Violet.  Google "Beers" list of medications.  These are medications that are most prone to cause side effects for seniors.

The diagnosis of dementia is a rule out diagnosis.  You rule out everything else that might be a cause.  It may take a while to evaluate completely.

Keep writing down your symptoms.  Take safety precautions.

Keep us updated as to what's going on with you.

Iris L.

Paul Hornback
Posted: Friday, December 6, 2013 9:43 AM
Joined: 8/9/2013
Posts: 584


Violet, hang in there! It took over a year for me to get a diagnosis and lots of tests and trips to the doctors and neurologist. Like Iris said, it is a matter of ruling out everything else and all that is left is Alzheimer's disease.

 

Follow the advice Iris gave and keep writing down all your symptoms so that each time you go back to the doctor, you can update him on all that is happening.

 

God Bless, Paul


vrswesley
Posted: Friday, December 6, 2013 10:06 PM
Joined: 11/15/2013
Posts: 92


well I know Im on at least 3 meds that can cuase my symptoms.. all psych meds which I need and my phsychiatrst dosnt at this point buy it.. so....

 

I am keeping track of my symptoms..the ones that dr bake thinks are just age..yesterday in about 12 hrs-the day time I lost words or some variation on that at least 10 times..more often in the eve3nung ...more ii talk more i have trouble.. by last night I was struggling to talk losing words like every other sentence if not more often. today not alot of trouble, but didnt talk much- very little.

 

how often does some one who is aging lose their words? anybody have any ideas?  just need a comparison...

 

Ill keep taking notes on myself.


vrswesley
Posted: Saturday, December 7, 2013 9:55 AM
Joined: 11/15/2013
Posts: 92


understand..just a little frustrating and of course scarey and I want to know NOW of course : ?
vrswesley
Posted: Saturday, December 7, 2013 6:46 PM
Joined: 11/15/2013
Posts: 92


I realized the other day-through research ..something ..people have asked if anybody in my family had ad Ive said no which is still true..but ..my dad had Parkinsons..i didnt know that was now considered a dementia type. so yes there is dementia...just another fact. Imm  just keeping notes and Ill talk to my doc when the time comes.
vrswesley
Posted: Saturday, December 7, 2013 6:50 PM
Joined: 11/15/2013
Posts: 92


another question, how long on average, does it take for people to be dignosied in some way... one why or another.. any ideas...months, yrs?
Iris L.
Posted: Saturday, December 7, 2013 7:53 PM
Joined: 12/15/2011
Posts: 18342


The results of the neurocognitive testing will give one an indication if there is neurocognitive decline or another psychiatric or neurologic condition.   

 

In my case, after the testing done in 2003, depression was promoted as a diagnosis, along with cognitive dysfunction.   

 

It wasn't until 2008 when diagnosis of cognitive impairment was defined as far as being a reality in my life.  The symptoms were there since 1987, but I was struggling along without recognition that this was so devastating to my life.

So to answer your question, it has taken years in my case.

Don't let it take so long in your case.  Demand that the doctors take you seriously!  Learn as much as you can so you can discuss with the doctors assertively and knowledgeably.

Iris L.
 


Mimi S.
Posted: Saturday, December 7, 2013 8:28 PM
Joined: 11/29/2011
Posts: 7027


Violet, I'm one with AD, so I don't remember if you said. Did you have a several hour long neuro-psych? The Pittsburg scan and also spinal tap can be used for diagnosis, but since both are mainly used for research, most insurance plans don't cover them. Most of the scans you are given are mainly to rule out other common causes.

 

And, unfortunately the younger one is, the longer the path to diagnosis. So much time is wasted.

 

And yes, if I'm in a crowd, tired, stress of any kind, the cognition is worse. And it's not due to depression. I'm not in the medical profession, but it makes sense to me that the pattern of answers would differ between a person with depression and one with dementia.

 

So many doctors still do not get the concept of both Early Stage and Early Onset.

 

In your profile you mention a brain tumor. That would definitely have cognition effects. What's going on with that?


vrswesley
Posted: Saturday, December 7, 2013 9:45 PM
Joined: 11/15/2013
Posts: 92


thankyou Iris, Im doing alot of research, learning how many signs I really do have, asking questions....like I just did...taking notes for the nuero, both the eval and my nuero doc.... soneone asked me if anybody in my family had dementia..I said no but my dad had parkinsons so he may have had it ..I didnt see him much in the latter yrs of his life  for other reasons...I needed space.. badly so couldnt be there for him.. bad time in my life.. kinda "coming of age" for me.
Iris L.
Posted: Sunday, December 8, 2013 3:17 AM
Joined: 12/15/2011
Posts: 18342


What's going on with the possible brain tumor, Violet?

Iris L.

vrswesley
Posted: Sunday, December 8, 2013 9:02 PM
Joined: 11/15/2013
Posts: 92


I havent had the several hour long evaluation yet, it is planed for late jan....I did have a cat  scan , they never told me the results.. so I doubt they found a tumor.. Im thinking about calling my nuero.. just have some questions for him. none of my other docs beleve me that somethings wrong or fixable.. I know somethiungs wrong.. I want to know my nuero's thoughts on it. Imm keeping close notes on whats going on with me and how often.. so... hoping he will belieeve me.. and continue to help. wish we wouldnt waste time.. wish I coiuld afford to improve my diet.
vrswesley
Posted: Sunday, December 8, 2013 9:11 PM
Joined: 11/15/2013
Posts: 92


I was reading oday that head injurys could cause this... as a teen I was thrown buy horse alot never knocked out but, landing on my head alot... I dont know but Ill mention it..
vrswesley
Posted: Monday, December 9, 2013 12:10 AM
Joined: 11/15/2013
Posts: 92


am going to try to eat the mederteraian diet.. Im supposed to be on it anyway.. just hard when I have so little food budget.. but I will try.
Iris L.
Posted: Monday, December 9, 2013 1:11 AM
Joined: 12/15/2011
Posts: 18342


We have farmer's markets here, but I find the produce to be less expensive in the supermarkets.

Iris L.

Mimi S.
Posted: Monday, December 9, 2013 8:51 AM
Joined: 11/29/2011
Posts: 7027


Often when one cuts back on meat, the amount of money spent goes down.

 

Because of reactions I'm off lactose. So, in the summer, I grow basil and make pesto. I freeze leftovers in an ice cube tray. One cube is a portion.

 

I buy grated cheese in bulk. A tablespoon, added to a bowl of soup or pasta is the needed protien.

 

So I can make past add a bunch of veggies, sometimes tomato sauce and a heaping tablespoo of grated or other cheese and that's dinner.

 

Or I substitute a square of feta cheese.

 

And yes, unfortunately farmer's markets are expensive. In an earlier time I went towards the end of the day. Farmers did not want to take produce home and so mark downs were fantastic. That doesn't happen in my area.

 

Yes, olive oil is more expensive, but for most purposes the cheapest will do. And I really don't use that much of it.

 

Remember that nts are also excellent sources of protein.



vrswesley
Posted: Monday, December 9, 2013 11:25 AM
Joined: 11/15/2013
Posts: 92


these are symptoms just from the last few days since I started taking daily notes...

-Dec 5, 2013,in 12hrs, 10 instances of losing words, more the later in the day it got.

-Dec 6, 7 times, lost words, didnt talk much,

-Dec 7, 4 times word problems or forgetting things...again didnt talk much, can “feel” the difficultly in my head..that if I try to talk Im feeling that Im going to struggle...can just feel it in my head.

-dec 8, 5 times todayt memory or word finding problems od some sort, one was a speaking back wards problem I think.. my sentence came out backwards..or something wrong.

-dec 9, seem easily confused today. First misplaced my wallet for about 20 minutes scared me, it was where id left it ..have just gotten covered up. Also got confused because I didnt read what my aid wanted me to do with my meds.. just assumed I was supposed to order them thats what we usually do. Called a pair of scizzors a knife.

 

 also am noticeing when there less stress and Im not as tired I do alot better.

 no I dont expect you all to diagnosis me just ..wonder if you have any thoughts.. did call my nuero today to ask some question.. like how conserned is he about dementia, etc.. when I told the person on the phone that quetion, she aked me who had used the word dementia. like I had brought it up.. which I hadnt.. I said he did. she said oh. like .. I dont know  maybe she thought i was overreacting. they are supposed to call back.



Iris L.
Posted: Monday, December 9, 2013 2:07 PM
Joined: 12/15/2011
Posts: 18342


Violet, learn one or more stress reduction techniques.  Stress reduces our cognition by half!

I do deep breathing and visualization.


Iris L.

vrswesley
Posted: Monday, December 9, 2013 5:19 PM
Joined: 11/15/2013
Posts: 92


yes I noticed thankyou for the comfirmation. days  when i dont have appts or am less tired ,like this weekend i did alot better.today i was very tired and had a doc appt.my mistakes were high again.
Iris L.
Posted: Monday, December 9, 2013 5:52 PM
Joined: 12/15/2011
Posts: 18342


I notice if I get five hours of sleep I can barely function the next day. I need at least seven hours, preferably eight hours of sleep in order to function well.  Restful sleep is VITAL. 

I used to get up often to go to the bathroom during the night.  But once I began using CPAP to treat sleep apnea, I rarely have to get up during the night.  I sleep through the night.  This too is very important.

If you are tired during the day, take a nap.  Even the yuppies take power naps.

Iris L.

Myriam
Posted: Monday, December 9, 2013 6:00 PM
Joined: 12/6/2011
Posts: 3326


It sounds like you're getting close to getting a diagnosis. Keep demanding a determination of what is going on with you. If it is Alzheimer's or another dementia, the sooner you get on the memory meds, the better...or are you on them already? Wishing you receive good news.
nomemo
Posted: Monday, December 9, 2013 7:42 PM
Joined: 3/21/2012
Posts: 439


i have found, with help of my cognitive therapist, that it's less stressful for me when i am speaking with someone and i forget a word to try and describe it, i.e. scissors, the thing you cut paper or fabric with....or knife, the thing you spread butter with or cut meat with.  it took me practice to take a deep breath and do this with people.....i was afraid of what they would think of me.  but i got over it really quickly when it was more stressful for me to not get the correct word out and i would begin stumbling over everything!!!

 

please be kind to yourself......deep breathe......and remember that you're not alone....we're here with you. 

 

God bless you.


vrswesley
Posted: Monday, December 9, 2013 7:53 PM
Joined: 11/15/2013
Posts: 92


not even close, I mean no doc agrees yet, but like I siad Im taking alot of notes on myself... havent had my eval yet, but will have it in late jan. basically what Im saying is Im fairly convinveced but none of my docs(except my nuero) are convinced.. he isnt convinced but at least hes open to the possiblity...yoou all know I dont want to be right but..I know somethings wrong.. just trying to live until then...you think it might be true huh?! just wondered..
nomemo
Posted: Monday, December 9, 2013 8:31 PM
Joined: 3/21/2012
Posts: 439


i've learned to always listen to what my body is telling me.  if something doesn't feel right or seem right to you, then keep on investigating, not just to get an answer that you may want to hear, but to get the CORRECT answer!  i know that it's frustrating to want to know NOW.....i've been there, believe me.

 

it took a year or so of my neurologist to NOT look for dementia, but look for other things instead.  He specializes in dementia, but said that he was going to look for other things instead of going straight for the dementia diagnosis.  That included testing for vitamin deficiency, multiple sclerosis, sleep apnea and others.  Only after these were ruled out did I have a cognitive eval, hearing test, 3 lumbar punctures, CAT scans, MRI's, neuropsych exam (7 hours), EEG and a second opinion with another neurologist who ordered SPECT scan.  then I got the definitive diagnosis of behavioral variant frontotemporal dementia (bvFTD).   That was around 2007-2008 but the neurologist said that I probably became symptomatic around 2000-2002. 

 

honestly, even I wasn't looking for dementia; i knew SOMETHING was wrong, but dementia never even entered my mind!

 

I went around the "rabbit trail" to, again, encourage you to be patient, make your notes and soon it will be January and time for your testing.  Please be sure to let us know how it goes.  We care!

 

God bless you!


Myriam
Posted: Monday, December 9, 2013 8:32 PM
Joined: 12/6/2011
Posts: 3326


I think I may have asked you this on another post, but have you taken the 3 to 4 hour neuropsychological test? That in combination with other diagnostic testing, like PET scans and bood tests are used to make a determination. 

 

You may have already read this, but it's a good list of tests that are done to determine if symptoms are the result of AD or other dementia. 

 

http://www.mayoclinic.com/health/alzheimers-disease/DS00161/DSECTION=tests-and-diagnosis 

  

http://www.alz.org/alzheimers_disease_steps_to_diagnosis.asp 


vrswesley
Posted: Monday, December 9, 2013 10:08 PM
Joined: 11/15/2013
Posts: 92


thankyou nomemo, Im grateful for you all.. you understanding and help and info mation. Ive learned so much! evewn if I dont have dementia(we hope) Ive learned so much...that there is life after an ad dignosis.
vrswesley
Posted: Monday, December 9, 2013 10:12 PM
Joined: 11/15/2013
Posts: 92


Ill look at your links, but no I havent had my eval yet its scheduled for late jan.. trying to be patient... not good at it : )
vrswesley
Posted: Monday, December 9, 2013 11:44 PM
Joined: 11/15/2013
Posts: 92


dementia is the first thing dr masih said.. dont know why..I truly didnt expect it. everybody was saying its meds, its old age... but it freaked me how fast things had changed, in just a few weeks I was having and now am having more and more trouble! notneceasrily end of the world scary but.. scary.

 

today (on the physical note) I decided to request that the handicapped busses thayt ?i take to get around town, I told them to please put in my computer file to onlty send either vans (that i dont have to climb stairs to get into.. or only send buses with wheelchair lifts in them ...they dont always cause I do walk ..with a cane but can walk but its just getting too hard to climb stairs to even get on the bus...Ive been trying to put this off.. under the thoery .. dont use it you lose it.. but Im losing it anyway... my thera[pist isnt going to be happy.. but its not her life. shes not happy that im having my aide set up my meds for me every week...she doesnt think its dementia and she feels I shoulf fight through the problem, I just dont agree with her.. I find it too overwhelming and tiring and scary.. and just alot easier to let dot do it. It makes my life easier. to not do it...less stress. but she doesnt buy the dementisa thery ethier.. at all.. as she puts it "I dont see it!" in my opionion, she sees me one hour a week.. not enough to tell at least at this point.


Iris L.
Posted: Tuesday, December 10, 2013 12:31 AM
Joined: 12/15/2011
Posts: 18342


Violet, what is the nature of your diagnosed disability?  Multiple sclerosis, for example, can cause a significant cognitive impairment.  So can systemic lupus, such as I have.  Do you have MS or lupus? Or any number of immunological diseases?  Many of them affect the brain.

 

Iris L.


vrswesley
Posted: Tuesday, December 10, 2013 2:36 PM
Joined: 11/15/2013
Posts: 92


I have several thing wrong with me and am on a million meds(about 25) I have fibromyalgia and obsesive complusive disorder and lots of other things. thyroid problems, migrains which im suddenly having more trouble with, its npot realy migrain but alot of headaches, again...diabetis.,arthritis(osteo),
Iris L.
Posted: Tuesday, December 10, 2013 5:52 PM
Joined: 12/15/2011
Posts: 18342


vrswesley wrote:
I have several thing wrong with me and am on a million meds(about 25) I have fibromyalgia and obsesive complusive disorder and lots of other things. thyroid problems, migrains which im suddenly having more trouble with, its npot realy migrain but alot of headaches, again...diabetis.,arthritis(osteo),
Violet, you have many conditions which are associated with cognitive dysfunction.  Also you have poly-pharmacy, which means taking a lot of drugs.  You can check each of your medications yourself, one-by-one, for cognitive effects and drug interactions.  You can use these sites:

http://www.rxlist.com 

 

http://www.drugs.com/drug_interactions.php 

 

 

Iris L.


vrswesley
Posted: Wednesday, December 11, 2013 12:18 AM
Joined: 11/15/2013
Posts: 92


thats why my pcp thinks it just med related, she has a point...but what to do about it....
Iris L.
Posted: Wednesday, December 11, 2013 12:27 AM
Joined: 12/15/2011
Posts: 18342


Violet, you might have remarkable improvement if you were able to reduce some of your medications.

As much as you can, work on Best Practices. 
 

 

Work on stress reduction.  Keep a positive attitude!

Iris L.