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Neurology Appointment
llee08032
Posted: Saturday, August 16, 2014 9:09 AM
Joined: 5/20/2014
Posts: 4408


I got my butt back to Dr. Sam. I did not realize I hadn't been there since 3/13! I had to fill out another form because I moved since my last appt which required the name of my PCP. I could not remember her name. Even now I can't remember and will have to look it up! Fortunately, he did not scold me and seemed to understand that I was not ready to deal with any of this and wanted to run for the hills. 

 

I took my composition book with the 10 questions and everything written down that has been happening since my last appt. I promised him I will do anything he asks of me at this point. He gave me new prescriptions for all the tests; neuro psych eval, MRI; sleep study; and more blood work. It is a little overwhelming and all ready I have thought I have too much coming up with work and I don't have time to be scheduling and getting all this testing! I do have a billing audit and site review coming up at work but I need to take care of me and designate some of the work involved to others!

I scheduled off work this Monday anticipating that I would need to schedule  appointments and get labs. I am OCD ish in work always pushing to get things completed and out of the way. Consequently, I am going to frame this as work I need to do and get done for myself! 

 


Adult only child
Posted: Saturday, August 16, 2014 10:40 AM
Joined: 11/28/2012
Posts: 303


IIee,

Isn't it amazing how the time has flown, hard to believe we're half way through August!  I would find your testing schedule overwhelming let alone trying to delegate the work environment.  You certainly have a full plate and do take care of you first.

Dana


teresa2014
Posted: Saturday, August 16, 2014 12:15 PM
Joined: 8/15/2014
Posts: 4


It takes a lot of time. I have spent all summer getting this done  good luck!
Myriam
Posted: Saturday, August 16, 2014 1:47 PM
Joined: 12/6/2011
Posts: 3326


Great work, llee, but monitor yourself to make sure you don't overdo.
Iris L.
Posted: Saturday, August 16, 2014 3:46 PM
Joined: 12/15/2011
Posts: 18342


Ilee, did you get a chance to take a look at the work accomodations site to see what might help you?   

 

I don't remember your age, but make sure you have at least 40 quarters of work in order to qualify for SSDI if you have to. 

 

Iris L. 


Iris L.
Posted: Saturday, August 16, 2014 3:57 PM
Joined: 12/15/2011
Posts: 18342


llee08032 wrote:

 Fortunately, he did not scold me and seemed to understand that I was not ready to deal with any of this and wanted to run for the hills. 

 

 

 

I can't think of any reason for a doctor to "scold" a patient.  A patient is there to be educated, not disciplined.   

 

I have been on both sides of this, as a physcian and as a patient and I know there are options in communicating with a patient.

Iris L.
 


llee08032
Posted: Sunday, August 17, 2014 8:20 AM
Joined: 5/20/2014
Posts: 4408


I did check out the Accommodations website-very useful info.
 I have to get a least another year of work in if possible.

llee08032
Posted: Tuesday, August 19, 2014 8:13 AM
Joined: 5/20/2014
Posts: 4408


I've made up my mind to follow through with the tests this time: labs completed yesterday; MRI this Friday; neuro psych next Friday and I'm waiting for the sleep study center to call me back for an appointment.
Iris L.
Posted: Tuesday, August 19, 2014 8:57 AM
Joined: 12/15/2011
Posts: 18342


Good for you, Ilee.  It will ease your mind to have more clarity about your situation.  Hopefully, the results will indicate something treatable and not a dementia.   

 

Please be mindful of Chef Steve's experience.  Please look at his original thread and review the advice given to him.  You don't want your options to be limited.

Iris L.
 


Mimi S.
Posted: Tuesday, August 19, 2014 9:48 AM
Joined: 11/29/2011
Posts: 7027


Hi Llee,

 

My, you have gotten a lot done.

 

My advice re neuro-psych.

 

You are taking the exam because you are experiencing difficulties. 

 

There will be things you flunk. That's OK. That's why you are there.

 

And if you are tired, ask for a break.  I negotiated that before I began.

 

During one of the first time exams, I did poorly on those lists of things to remember. And they kept repeating and repeating. I felt like screaming: why don't you stop. I can't remember!  But I continued to do my best. 

 

At the final conference where we went over the tests, the results of that showed that I remembered more each time the test was repeated. 

 

Out of my mouth came: YOU MEAN I CAN STILL LEARN!!

 

At your conference, the most important thing to know the things that you did well and those you did poorly on. 

 

In your daily life, you concentrate on things you can do and figure out how to compensate for the weak points.

 

Thanks for keeping us in the loop.


llee08032
Posted: Wednesday, August 20, 2014 7:36 AM
Joined: 5/20/2014
Posts: 4408


Thank you Mimi,

I will definitely let the psychologist know I am just as interested in knowing what my strengths are as I am the deficits!


llee08032
Posted: Saturday, August 23, 2014 9:18 AM
Joined: 5/20/2014
Posts: 4408


MRI complete. Neuro psych eval and sleep study to go. It feels good accomplishing what I have for so long put off.

I got lost driving from the MRI appt to work but was able to find my way back to the right road in a short time period. Another affirmation that I need to get clarity and figure out this trapped in a maze feeling when driving and so forth. I'm assuming no news is good news as far as the MRI goes. 
I was wondering if I should take my notebook to the neuro psych eval in case I forget something? I guess if I have to ask then I should even if I don't need it.
BTW Mimi,
Out of my mouth came: YOU MEAN I CAN STILL LEARN!!

Wonderful to hear that!

Words cannot not express my gratitude and appreciation for having all of you to share in my journey even though the destination is unknown. The courage, hope, inspiration, respect, encouragement, love, acceptance, wisdom, information exchange, positive regard, genuineness etc is but a brief and a short depiction of both all that occurs here on the board and of all those who participate.

It takes one good soul to recognize another and so many are here!

Iris L.
Posted: Saturday, August 23, 2014 9:39 AM
Joined: 12/15/2011
Posts: 18342


Good for you, Ilee!  It's great to be proactive and take steps to know what is going on with you.  Knowledge is power!

Why did you get lost?  Did you not know the way or did you not recognize the landmarks?  Please, figure out a way not to get lost, GPS or a map.  Make sure you keep your cell phone charged.  We don't want to hear a Silver Alert for Ilee!

We support each other on this board. That's what we're here for.  If we don't support ourselves, who else will?

Yes, we can learn.  It's a common misconception.  We just need a different approach.

I would not advise that you disclose to your employment what you are undergoing.  Know what you are dealing with first.  You could be at risk for firing.  We don't want that to happen!
 

 

Stay strong, Ilee!  You're doing great! 


Iris L.
 


Mimi S.
Posted: Saturday, August 23, 2014 10:08 AM
Joined: 11/29/2011
Posts: 7027


LLee, 

 

You might want to take a notebook to the final evaluation, but you should be given a copy of all that you want.

 

My guy me a chart which my neuro had not seen done and liked.

Across the top were all the tests I had been given. Along the sides , the scores I had received. 

 

Instead of the 50% mark being what I was judged against, it was my IQ. Have you ever been given such? In my case I hadn't. However, he made a what I think was an accurate estimation based on talking with me and my prior education and work history. 

Then a big heavy line was placed at what he thought was my prior !Q level. All individual score were plotted on the graph.

 

As I write this, I realize the prior IQ  was not really necessary.  It's what's there now that's important.

It was very easy to see at a glance what my strengths and weaknesses were. 

 

And as I may have said before that knowledge is the power you'll have in managing your life.

 

Getting lost is often the first symptom that early onset people mention. You were fortunate that you were able to work yours out.

 

Not remembering where I was going was one of the first things I noticed. It used to take me blocks to remember. Now it's only a matter of seconds. It happened again this morning. 

 

Just try to relax and try to do the tasks. You know why you're there, so try not to get upset when you can't do several of the tasks.

Thanks for keeping us in the loop.


Lisa428
Posted: Saturday, August 23, 2014 12:48 PM
Joined: 12/5/2011
Posts: 795


llee,

 

Sounds like you are doing a great job in getting all your tests done.

 

You have been given some good advice from many people who know about getting an accurate diagnosis.

 

I try to always bring my notebook with me to all my doctor's appointments.  It helps me remember what has been going on.  It, also, helps me remember what the doctor has told me.

 

Good Luck with your testing.

 

Please, let us know how you are doing.

 

Peace and Hope,

Lisa


Lisa428
Posted: Saturday, August 23, 2014 12:51 PM
Joined: 12/5/2011
Posts: 795


Dear Teresa2014,

 

I read your post.  Appears you are new to our message boards.

 

Welcome.  Please post more about yourself.  Perhaps start your own thread here?

 

Please, let us know how you are doing.

 

Peace and Hope,

Lisa


llee08032
Posted: Tuesday, August 26, 2014 7:08 AM
Joined: 5/20/2014
Posts: 4408


I ended up making sleep study appt for the Friday also. So that's neuro psych and sleep study that night. My guess is the neuro psych will be tiring. It is a little overwhelming with both appts back-to-back but at least I'll have it over with and I can rest Saturday. The sleep study appt setter was pushy with getting the appt scheduled quickly. I forget what her rational was for the appt needing to be scheduled so quickly. I couldn't wait to get off the phone with her!
Iris L.
Posted: Tuesday, August 26, 2014 11:31 AM
Joined: 12/15/2011
Posts: 18342


I don't know if she told you the preparation but don't put any hair dressings on your scalp because you will be getting electrodes applied to your scalp as for an EEG.

 

It will be great to have answers.

Iris L.


llee08032
Posted: Thursday, August 28, 2014 7:25 AM
Joined: 5/20/2014
Posts: 4408


Thanks Iris,
I will have to go  with the frizzy's. 

llee08032
Posted: Saturday, August 30, 2014 9:12 AM
Joined: 5/20/2014
Posts: 4408


I scheduled off from work yesterday and went for the neuro psych eval  prepared to be there for 6-7 hours and get the test done. As some of you may know I've been resistant in following through with testing for the past for 1.5 years or more so this is a big deal to me to accomplish all the testing. I interviewed with the psychologist for over an hour and then he said "the interview is over now and our next step is to schedule another appointment to get you back in for the testing." I must have looked surprised because he asked "did you think you were going to get tested today?" He said "no, that's not the way I do the testing. I do the testing in 1.5 hour increments which will require 4 or more appointments." He tried to explain some rationale for doing it this way but the bottom line became clear to me when he said "if I schedule an appointment and the person is unable to attend then that's 6 hours of appointments I lose."

I was very disappointed! However, I thought well I came this far with him let me see how the scheduling will work? I made 3 appointments the first which is 2 weeks away and then 2 others later in September all which are in the middle of the day and which will interfere with work schedule and perhaps require 2 additional appointments in October! Shouldn't I have been informed of this when scheduling the appointment? I think I should certainly have been informed. My neurologist gave me several choices of psychologists to go to and did explain that he was one of the newer one's that another patient recently went to and liked him! I'm angry at myself for choosing him because the location was convenient. 

I am going to first make an appointment with the other psychologist and then cancel the appointments.

The good news is that I did complete the sleep study last night!

Iris L.
Posted: Saturday, August 30, 2014 12:44 PM
Joined: 12/15/2011
Posts: 18342


Ilee, I don't blame you for being upset!  You should have had more preparation for what was about to happen.  I must admit I never thought of a financial reason for the reason of splitting up the testing.  My testing was completed in three sessions--two sessions with the neuropsychologist, and one session with her assistant to proctor the mutliple choice testing that I did in the office. 

 

I don't see any reason for spreading the testing out for so long.  My testing was completed within about 10 days. 
 

I posted in another thread that I learned more information about poor sleep and patients with schizophrenia and delusions and hallucinations.  I'm surre poor sleep is responsible for many of the problems patients with dementia have.  In thinking back, I know many of my medical problems began with a prolonged period of sleep deprivation 27 or 28 years ago.

Ilee, you already said your sleep is disrupted.  Figure out ways to get better sleep, or how to catch up on the weekends, if possible.  Sleep deprivation is not taken seriously by the doctors.  Even my sleep doctor did not seem too impressed when I told him I had discovered the cause for my problems.  Search for sleep deprivation and see what applies to you.

I was diagnosed as having sleep apnea after three sleep studies before I was offered treatment fot this.  I had a remarkable response after the first night of CPAP.  It was like a miracle!  I awoke refreshed and and my brain was not foggy. 

 

I wonder what your sleep study will show.

Iris L.



 

 

 


llee08032
Posted: Wednesday, September 3, 2014 7:53 AM
Joined: 5/20/2014
Posts: 4408


I was able to schedule a neuro psych eval for 9/18 where I will be able to complete the testing in one day. They told me I will be there for most of the day. I'm feeling relieved to be able to complete testing in one day.
llee08032
Posted: Tuesday, September 16, 2014 7:35 AM
Joined: 5/20/2014
Posts: 4408


I am anticipating the neuro psych eval and the long day this Thursday. It will be good to have this out of the way. I keep wondering if I have FTD because of the increasing word finding difficulties. I have been having difficulty keeping up with the board lately. I tried to post something earlier in the week but it went poof somewhere!
Myriam
Posted: Tuesday, September 16, 2014 4:16 PM
Joined: 12/6/2011
Posts: 3326


Hope the eval goes well. We miss you, but please be tender with yourself.
llee08032
Posted: Wednesday, September 17, 2014 7:02 AM
Joined: 5/20/2014
Posts: 4408


((((((Myriam)))))

Thank you!


llee08032
Posted: Saturday, September 20, 2014 9:08 AM
Joined: 5/20/2014
Posts: 4408


I finally did it...I completed the neuro psych eval this past Thursday. I was there from 9 am - 4 pm. I was looking for excuses not to go but it was not as bad as I anticipated. This is ((((me)))) taking care of me!
Paul Hornback
Posted: Saturday, September 20, 2014 2:43 PM
Joined: 8/9/2013
Posts: 584


llee, I'm so glad you went and did the testing. It's now over so pat yourself on the back. You made it through the long ordeal of testing>

We are so very proud of you!

God bless, Paul


Lisa428
Posted: Sunday, September 21, 2014 4:37 PM
Joined: 12/5/2011
Posts: 795


llee,

 

Congrats on finishing your tests!  It's a good feeling, isn't it?!

 

Please, take care of yourself.

 

Let us know how you are doing.

 

Peace and Hope,

Lisa


llee08032
Posted: Tuesday, September 30, 2014 7:50 AM
Joined: 5/20/2014
Posts: 4408


It is a good feeling having gotten through the tests. It does seem like a long drawn out process with perhaps more tests to come. I am feeling worse following the neuro psych eval like I didn't do well or failed in some way! I'm sure it is not unusual to feel this way. I have the neuro psych feedback appt on 10/13. Ugh...
Mimi S.
Posted: Tuesday, September 30, 2014 10:27 AM
Joined: 11/29/2011
Posts: 7027


Only a few more weeks.

Remember you want to know your strengths and your weaknesses. 
It sounds a though you are doing this all by yourself. i did too. And I survived.
I can't remember ... are you involved in Best Practices?

Iris L.
Posted: Tuesday, September 30, 2014 10:59 AM
Joined: 12/15/2011
Posts: 18342


 I have noticed that people seem to think this is a test that you can pass or fail.  It's not.  It's an evaluation of your cognitive status.  It's like taking your blood pressure.  You don't pass or fail a blood pressure test.  You want to know your cardiovascular status. 

 

My testing was confirmation of what I was already noticing in myself.  I felt relief that I was no longer floundering alone, and that I had finally found one person who believed me.  I could finally get some attention and help.

Iris L.

 

 

 


flyingEagle1
Posted: Tuesday, September 30, 2014 5:16 PM
Joined: 7/8/2014
Posts: 15


I went to have a MRI at my primary doctor request, it showed my brain is that of a 70 to 75 year old alzheimer patient. Do I need to go see a Neurology? What is their purpose/ please let me know. I don,t want him to tell me something worse. I am 58 years old.
Iris L.
Posted: Tuesday, September 30, 2014 6:03 PM
Joined: 12/15/2011
Posts: 18342


Welcome, flying eagle.  I don't remember if you have posted on this board before.  Ordinarily an MRI is perfomed as part of a total medical evaluation for the cause of memory loss.  After the testing, and after ruling out the many other causes such as thryoid disease, vitamin deficiency, overmedication, etc., the doctor may diagnose dementia.  Usually the doctor is a neurologist, because they are familiar with the conditions that mimic dementia, and they can begin treatment, if dementia is the diagnosis.   

 

So the answer to your question is yes, you should see a neurologist.  Look for a neurologist who regularly diagnoses and treats the dementia, because you want an experienced neurologist.  You might even search for an Alzheimer's Disease Reseach Center or a memory clinic.  You want a specialist, especially at your age.

Doctors can't diagnose based solely on the MRI.  There are people who have an abnormal MRI, but who have normal cognition.  Who knows why?  The doctors don't.  Doctors must take everything into consideration, and then re-evaluate over time.  Dementia is a progressive condition.  Sometimes a person will have a brain condition that does not progress. 
 

 

If you cannot find a specialist on your own, you can call the Helpline and ask for the nearest specialty dementia group in your area.  The number is 1-800-272-3900. 

Can you tell us about how you came to have an MRI of your brain?  What symptoms are you having?  How are you doing now? 

Please update us, and keep posting questions.  We are here to help you.

Iris L.
 


llee08032
Posted: Wednesday, October 1, 2014 7:57 AM
Joined: 5/20/2014
Posts: 4408


Mimi, Yes. I am doing this by myself. Only a few close friends know about the memory lapses and the testing process so far. I won't tell family until I have a clearer idea of what is wrong. Not practicing Best Practices yet but I have implemented fresh vegetables and fruits into diet. 

Iris, I do like the blood pressure analogy. I think I'm wired to always want to get an A on the test and I feel like I got a C or a D. Ironically, during the test I had little difficulty with word finding so perhaps I did better than I think. I did not do well with areas of the test that indicate deficits in the frontal lobe. 


Iris L.
Posted: Wednesday, October 1, 2014 1:04 PM
Joined: 12/15/2011
Posts: 18342


llee08032 wrote:

 

 

. I did not do well with areas of the test that indicate deficits in the frontal lobe. 


 

 

Ilee, you cannot tell on your own how well you did.  This is because, to put it in school terms, the testing is scored on a curve.   

 

The scoring compares how well you do in comparison to others of your age and educational level.  So if you think you did not do well, how well did your peers do?  You don't know that.   

 

That's why the neuropsychologists develop scales of how well different ages and educational levels do.  Then they figure out where you fit for the different categories of tests.  That's why they get paid the big bucks. 

 

Regarding Best Practices.  Best Practices are healthy habits that everyone should do, but they are geared toward those of us with cognitive issues.   

It's hard to change eating habits.  It's okay to make changes in baby steps, if that will help you make the change more permanent.
 

Are you already doing any exercise?  Walking is great, or doing something at the gym, if you can't get out to walk.
 

Stimulating the brain is not just doing puzzles.  You are still working, so I'm sure you can find ways that stretch you mentally.  The same with socialization.  Daily you are surrounded by people.  And you have the added challenge of being around young people, who are by nature stimulating.   

 

Two of the aspects of Best Practices that may be a bit difficult for you are getting good sleep and avoiding stress.  These you must try to implement as well as you can, because they are really important, and do significantly  impact cognition. 

 

Keep up with whatever you are doing.  We will be eager to learn the results of your testing.  Whatever the result, we will support you.

Iris L.