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Appointment memory clinic advice
Daughter#2_
Posted: Tuesday, May 3, 2016 5:26 PM
Joined: 12/29/2015
Posts: 11


Thank you all for the advice you have given so far.  I have found it a source of strength when I'm navigating difficult terrain. I have been voicing serious concerns to my GP about my memory since October and have had difficulties with vision/visual-spatial and language issues intermittently for years. I have been referred to a memory clinic that specializes in AD and researches younger onset and early diagnosis. (I'm 46, my Dad was 50 at diagnosis. My sister, 50 has a diagnosis of a neuro-cognitive disorder based on a former head trauma, so it is complicated).

When I asked my GP directly, he felt my symptoms were caused by anxiety. I completely disagree, but did share that I would try to remain open as an anxiety diagnosis would be a relief...however, my gut tells me it is not. I'm just not anxious by nature and the impact of my experiences are too concerning and sustained to ignore.    

My appointment is in 1 week. I am going alone (I'm single, that's more for another post). My question is how best to address the doctors and manage things in a manner that can be heard.

When I prepare as best i can, I get responses like "See, you're fine, look you can keep track of your symptoms..." Of course, it took me HOURS, over multiple attempts in a silent room, but since I can organize some thoughts/dates I must be fine. (ugh) I'm exhausted, and quite frankly offended, by the minimizing of my concerns. 

I initially thought I would have basic neuro-psych testing done, but it is much more comprehensive.  It is a full day (7:30-5) at the memory clinic.  I'll have an:  MRI, EEG, lumbar puncture, blood work, neuro-psych testing, neurologist appointment and a meeting at the end of the day to review initial findings. A more formal diagnostic impression is given in a week's time. I am so thankful to have the appointments condensed in that manner and I do not want to squander the physician's (or my) time. 

I'm leaning towards pushing the discussion to the context of biomarkers. (CFS, Amyloid levels) because it is so disheartening to feel people don't believe me or feel they think I am somehow exaggerating (I recently got in a car and drove away with a total stranger thinking it was a taxi. scary. NOT exaggerating). 

Any thoughts on approaching this appointment and advice from folks who've had similar experiences?

Thanks Again!


Iris L.
Posted: Tuesday, May 3, 2016 6:38 PM
Joined: 12/15/2011
Posts: 18508


Welcome, Daughter.  Unfortunately, from what I have observed from reading years of posts, doctors don't seem to pay much attention to patient's self-reports of history of memory lapses.  That was my own experience, also.  My neurologist did not begin to take notice until my neurocognitive testing report came back impaired.


What you might bring to the appointment, which might have more impact, is a report of how you are handling your financial affairs and paperwork.  Are you paying bills on time?  Are you managing your money appropriately?  Is mail piling up?


How are you doing at work?  Have you had a bad performance review?  Bring this information to the consultants.


Also, check each prescription and non-prescription medication for memory loss side effects.  You can use www.rxlist.com. 


There is a Doctor's Appointment Checklist to take to the doctor's appointment from alz.org.


http://www.alz.org/documents/national/ed_doc_checklist.pdf

Please keep us updated as to how the appointment goes.


Iris L.

 


Mimi S.
Posted: Tuesday, May 3, 2016 6:56 PM
Joined: 11/29/2011
Posts: 7027


Lumbar puncture. Good. this can show AD before it shows in a brain scan and before it is shown by loss in the cognitive area.  sounds good.

It's a long day and I hope they give you breaks. i do hope the neuro-psych is scheduled early in the day and things like lumbar puncture at the end. 

 Bring snacks and water with you.  If you are more tired than usual and are asked to do a cognitive test explain that the results might not be valid. (Not sure if that is the right term. Once I knew.)


BillBRNC
Posted: Tuesday, May 3, 2016 8:31 PM
Joined: 12/2/2015
Posts: 1018


Daughter #2, I have been taking a break from posting for a few days, and I plan to continue, but your message seemed to call for a response. I too just went to the memory assessment clinic for all the testing and Pet Scan stuff, and I found out they firmly believe I have mixed early onset Alzheimer's and Lewy Body Dementia. I'm 65, though. What I can suggest is that you not worry any more than you have to, tell them what you know, be specific, and do everything you can to get them to give you some type of Pet Scan to rule in or rule out the news that nobody wants to hear. Take the testing, do your best, because they can tell if you are cooking the books so to say. Personally, I wanted to know the truth. I got it, it wasn't good, but that is the way it is for most of us on this Board. Good luck. Bill.
llee08032
Posted: Wednesday, May 4, 2016 7:57 AM
Joined: 5/20/2014
Posts: 4408


Daughter,

The memory clinic Dr's hopefully, will be sensitive to the issue of having your cognitive problems and concerns minimized as this is their specialty. Keep mentally reminding yourself that your concerns are real and valid, and that you are doing what any person in their right mind would do in your shoes under similar circumstances. To ignore what you are experiencing and not do anything would be foolish. Hold your head up sister, and know that you deserve to have your concerns addressed and that you are proactive in doing just that. 

Don't let others who know nothing of what you may be dealing with make you feel like you are blowing losing the car keys out of proportion. It is sad that some Dr's and some persons who do not have an iota of a clue do not recognize anxiety as a normal response under some circumstances and work toward normalizing our concerns and giving us assurance and the support we need.

I often wonder how some of these same persons would respond if they were in our shoes?

Please do check back with us and let us know how you are doing and how the testing went.



llee08032
Posted: Wednesday, May 4, 2016 7:59 AM
Joined: 5/20/2014
Posts: 4408


Bill,

I was just thinking of you this morning and here you are. Good to see you on the board.


eaglemom
Posted: Wednesday, May 4, 2016 8:30 AM
Joined: 3/7/2012
Posts: 2774


One thing I would like to add is having someone with you. A friend, co-worker, etc. just another set of "ears" to be with you. I realize they will not be in the room when testing is going on, but it would be nice for you to know someone is there with you.

eagle


Michael Ellenbogen
Posted: Wednesday, May 4, 2016 8:53 AM
Joined: 11/30/2011
Posts: 4460


 In order to show some form of dementia it is critical that you can show that there are things that you can no longer do on your own. It must effect at least two areas of life.  Driving is one example if that has become a issue. Make a list and add them to the top of your list.

 


Mimi S.
Posted: Wednesday, May 4, 2016 8:59 AM
Joined: 11/29/2011
Posts: 7027


We keep having further thought.

Don't worry if you can't get past the first few questions. There was one that I couldn't even get the first!  That's why you're there. Just do your best.

And for most of us receiving the news was a shock, yes. However, many of us said it was a relief and a Validation.

And even if diagnosed, yes, we have received a death sentence. Not today, not tomorrow and maybe not for years!  We have a chance to be proactive in our own care.  We can become Advocates for dementia in general and the particular type we have.  We can become proficient in Best practices.  

I truly feel I have much to live for and contribute to society.


Michael Ellenbogen
Posted: Wednesday, May 4, 2016 9:08 AM
Joined: 11/30/2011
Posts: 4460


In your case I would probably recommend taking medication for depression just to rule it out for a few months if you have not.

 


jfkoc
Posted: Wednesday, May 4, 2016 10:22 AM
Joined: 12/4/2011
Posts: 21242


Your GP has done all the lab work? (see diagnosis section, alz.org)
Daughter#2_
Posted: Sunday, May 8, 2016 2:24 PM
Joined: 12/29/2015
Posts: 11


Thank you for your wisdom and suggestions.  This was very helpful.
Daughter#2_
Posted: Sunday, May 8, 2016 2:31 PM
Joined: 12/29/2015
Posts: 11


Thank you Bill.  I am overwhelmed by the support and response.  The process can be so lonely, especially concerning what/when to share and with whom.  Thank you for your advice. I'm scheduled for an MRI as part of the screening, I'm not sure about about PET~ I think that is a possibility they decide as the day goes on. I share your philosophy of wanting to know. It would be far preferable to be healthy, but in the absence of that, I'd rather look at and plan for whatever comes next head-on and chin high.
Daughter#2_
Posted: Sunday, May 8, 2016 2:38 PM
Joined: 12/29/2015
Posts: 11


Thanks for the tip. I can ask the docs about it, but honestly, I don't feel depressed. Strange I know. I do have some anxiety, but who wouldn't when you realize you're trying to get into your house using your credit card instead of a key...(*smile. I have learned to find the humor in some of this, or it would be too embarrassing!)
Daughter#2_
Posted: Sunday, May 8, 2016 2:43 PM
Joined: 12/29/2015
Posts: 11


Lab work was done.  I tried to get my results, (I'm having trouble navigating that type of thing..) but have not heard back. It's been 6 weeks, so I'm guessing no news is good news *smile They will repeat some again I believe, but I don't mind so long as everyone is on the same page.
jfkoc
Posted: Sunday, May 8, 2016 5:56 PM
Joined: 12/4/2011
Posts: 21242


Please be certain they did complete hormone checking!
Daughter#2_
Posted: Tuesday, May 10, 2016 4:09 AM
Joined: 12/29/2015
Posts: 11


jfkoc wrote:
Please be certain they did complete hormone checking!

I think this is possibly a culprit, given my age. Should I ask for a check on estrogen levels? Anything else?
Daughter#2_
Posted: Saturday, May 14, 2016 7:48 AM
Joined: 12/29/2015
Posts: 11


Hi folks, Thank you all for the support you have offered.  I had my appointment at the memory clinic and am awaiting the results.  Everyone was pleasant...but no news yet.

I do think whatever they relay will be a relief because I just want to understand what is happening. (Earlier last week, I found myself trying to open my front door using a credit card, in place of my house keys...so bizzare). I'll keep you all posted.