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Feeling like I am grasping at straws.
julielarson
Posted: Tuesday, January 3, 2017 8:42 AM
Joined: 9/30/2015
Posts: 1155


I wrote out the things I want the doctor to know about how I am functioning right now.. but it feels like I am grasping at straws with all that I wrote down.. How will he know that any of it matches with anything he might tell me? I am doubting that any of it adds up to a diagnosis and am afraid I am opening myself up again for him to say.. this list of things needs to go to your prescriber because they are all mental health related.. I am losing my steam where all of this is concerned. So I rock myself all day long every day... What is that going to tell him about my neurological condition? I know for me it says hey I have a habit of movement that is not natural for an adult human being.. but I do it and I do it no mater what usually.. I only stop if I think someone may not understand me doing it.. and that does not last long either.. LOL! Never mind that repetitive movement can be a part of bvFTD...
Michael Ellenbogen
Posted: Tuesday, January 3, 2017 8:54 AM
Joined: 11/30/2011
Posts: 4460


 I would start out by letting him know how long it took you to create this list and the struggles. So many times they think that if we can create such a list there is nothing wrong with us. They don’t realize how much effort goes into doing it.

 


julielarson
Posted: Tuesday, January 3, 2017 8:56 AM
Joined: 9/30/2015
Posts: 1155


Michael it took me many days to come up with this list.. I would say it was made over about 2 weeks.. I also copied it over too so that it was easier to read because the first copy was not so easy to read.. My hand writing has gotten worse too so I had to really work to make sure it was readable.
The_Sun_Still_Rises
Posted: Tuesday, January 3, 2017 9:33 AM
Joined: 7/24/2015
Posts: 3020


First of all...there are like 1,000 things that you cannot control about this appointment.  No matter this doctor's specialty...that doesn't mean that they have a friggen clue.  About 95% of doctor are brainless in that if you symptoms do no perfectly match up with the 3-5 things they know, and you do no look like their other patients...they have no clue what do you.  You bank a lot when you assume ANY specialist know about FTD...or even dementia in general (even the dementia experts).  So there all that over come. It a dice roll...and it may or may no have been a good dice roll, and it may be a dud....and it was that before you even show up...so you just cannot take that personally. 

Secondly, all you can do is the best you can with what you got.  Hindsight always 50/50 and you will always think what you coulda, woulda, shoulda said or done....but in the end, all you can do is the best you can with what you have.

That said....a few things I have learned along the way.  Please understand the bulk of human interaction have never made logical sense me, so much of my learning have be manual and thought out....so what I sharing what my mind thinks, with the weird language that go on in my mind in order make it make sense me.

For the doctors who the idiots (whom a monkey could do what they do), it helps make you list sound EXACTLY like the ones online....same wording....and THEN...add real life examples of you doing that.  Like...just putting emotional outburst mean nothing or very little...but describing how you suddenly want buy everything in the infomercial even though you no have the money (sound just like FTD).  <--- This also why I recommended querrying the FTD groups, so you can get a better sense what it present like.

Why this works, in my experience, is dctors go by what they can see...and if you can no display it there in office (Alz+'s walk in there in you undies), then give them a visual description that they can see their mind's eye.

You have get good at describe you difficulties in a way people can see - and in HOW it affect you life.  Like the above description, so now I have keep an extremely careful watch over my finances as otherwise I am liable over spend.

A good doctor will be happy you brought the list....a bad doctor will be miffed that you did...again, that no personal, just a way tell the two apart.

Also...keep in mind what this doctor can and cannot do....what their role or job function is.   You should bring a copy and state that you got a neuropsych, but that you are concerned because they did no score it using the DSM 5...(major or minor neurocognitive disorder)...and that you are concerned because you have been progressing...and that you are interesting in trying Aricept. 

Getting the doctor agree give you Aricept is the first in on the way dx. 

Most neurologists are no going question the neuropsych...and the neuropsych is your dx...their job is (like any monkey) order MRI and Spinal Tap rule out, as well as other labs rule out other things.  And that ALL they can do. 

Beyond that...and maybe ordering importance for you...

1) Aricept Rx  (bear in mind you will want start at 5mg for 6 weeks and taper up another 5mg monthly until at 20mg);

2) All you labs (you will need those, and it will show you are compliant);

3) RE-score you Neuro-psych possibility....because you'd really like know what it is, because you concerned as you keep progressing (ie could it be FTD?);

4) have conversation could you other meds be causing it? 

If you can secure an Aricept rx, it means that this doctor at least sees that you have cognitive issues.

Anyways....I hope that helps.  People around here, busy, noisy, jumping around, and I a bit confused and disjointed so I no sure I even making sense.

Hang in there, what will be will be...

<3


julielarson
Posted: Tuesday, January 3, 2017 9:38 AM
Joined: 9/30/2015
Posts: 1155


Sun you made perfect sense.. Thank you.. I can see I need to work on my list of symptoms.. I did not relate how each thing affects me..
julielarson
Posted: Tuesday, January 3, 2017 11:02 AM
Joined: 9/30/2015
Posts: 1155


Sun most of the FTD groups want you to have that diagnosis to join and I do not know for sure I have that so I did not join,..
alz+
Posted: Tuesday, January 3, 2017 4:22 PM
Joined: 9/12/2013
Posts: 3608


just saying happyish new year!

about aricept: I take the lowest effective dose of anything. The neuro I saw for diagnosis gave me the 5mg and I felt like it was rocket fuel. I recall the next prescription was for 10mg. Within a month I was covered in dark raised plaques, the neuro was let go due to his age (over 70), and the Aricept also increased my feeling of nervousness.

That it worked so fast for cognitive stuff was evidence to neuro of ALZ.

I tried all the other drugs too but side effects outweighed benefits.

For people that do not have bad side effects the drugs seem to help a lot.  

*****

reading different posts today of new people trying to fit their life to a new future - it seemed like I was tossed into the deep end of a pool and was treading as fast as I could. It was overwhelming, miserable, lots of fear and high anxiety.

Looking back I felt like I was drowning. 

Using what ever worked for me I gradually learned to get to the shallow end and stand there. Everything started to get easier. I quit testing myself and developed a philosophy.

*****

My Mom is going into hospice this week but she is still  sitting up and eating again. Never-the-less the anxiety about getting down to see her left me shaking and weak.

Still learning what is too much and what is possible.



grandmalynda
Posted: Tuesday, January 3, 2017 4:22 PM
Joined: 12/3/2016
Posts: 374


Julie, Sun, & Michael:  All of your experiences and info are very valuable to me.  Julie, your post came at just the right time for me.  I'm also gearing up for a visit with a new neuro.  I've got a list of things I am experiencing, but I see that I need to elaborate more on how they affect me.  I wish you the very best as you forge ahead.

--Lynda 


julielarson
Posted: Tuesday, January 3, 2017 5:05 PM
Joined: 9/30/2015
Posts: 1155


Thank you Lynda, I too wish you luck in your meeting with the new neuro you are going to.
julielarson
Posted: Tuesday, January 3, 2017 5:24 PM
Joined: 9/30/2015
Posts: 1155


Alz it is good to hear from you.. Thanks for commenting about the Aricept. I am only on 10 mg per day of it and I seem to go alright with it if I take it early enough because I was taking it in the morning with all my other pills and it was still keeping me awake at night.. Big hugs to you !
The_Sun_Still_Rises
Posted: Tuesday, January 3, 2017 9:39 PM
Joined: 7/24/2015
Posts: 3020


All I can say is try no over think it (yeah right she say). 

I spent many long years (2009-2015) un-dx'd...I saw many doctors, specialists, and "experts" in that time.  In that time, I did MY best be organized, concise....and just make it no be ME who was keeping me from be dx'd (and I type-a, so you can imagine). 

I (still) have a notebook of all my various issues and pertinent chonoligical of labs, neatly organized with tabs and index.  I have ready-lists of a few pages all my pertinent lab results ready go and reference.  I have note pages (short statements, blips) of HOW each thing affect my daily life.  Oh hell, when I stopped digesting most food...and doctors would STILL no help me...I took pictures it in toilet, put those in there as well.  I have photos my muscle tightening pulling my toes and fingers out of place.  It have my genetic testing and a couple of research articles explain why some things important.  It have genetic defect graphs re the methyl cycle.  It a good damn binder.  It contains all a doctor would need dx me. 

What did that earn me (please no mention it took me at least 2 years do, and was originally done for Social Security)...."well, if you can do that, you must no have any trouble you brain...as that more than most can do."

Some people think I a dick, but I a kindly, gentle sweetie in life....and I view see doctor in a Buddhist light...what they give me I will have, what they do no, I will no have.  I had deep compassion for them as each passing year my case more complicated hard them figure out. 

In the end, after my journey get dx (literally) nearly killed me....I learned a powerful lesson...it was never MY fault that I did no get a dx.   After all, I showed up...I told them my symptoms, I presented my labs...I did MY part, the rest was on them. 

So when I say, in the end...the best you can do hunny, is you best....let that be ok.  It will work, or it will no work...but in the end, whatever list you show up with...however hard time you may have speak or say what you need say - a GOOD doctor will listen and really help you, and all the rest will revolve you through the door.  Sometime the BEST that can be achieved is get the rx you want...or a test you feel you need ordered...and that the best that doctor can do.  You cannot control the doctor who show up...or whether they will be good you that day...ALL you can do is you best....and on some level that have be ok. 

<3


julielarson
Posted: Wednesday, January 4, 2017 7:48 AM
Joined: 9/30/2015
Posts: 1155


Sun thank you for helping me with this.. I was so lost. I wrote out the goal of having a second opinion and I will only recopy everything one more time just to get it all in an easy to read format.. I wish I had a copier for my computer that actually worked then I could do it all on the computer but I do not have one.. Sun be blessed today.. and thank you to everyone who gave me their two cents on this.. You are really a treasure to me.
julielarson
Posted: Monday, January 9, 2017 1:20 PM
Joined: 9/30/2015
Posts: 1155


All I can do is give it my best and in all likelihood he is going to go with the psychiatric condition as being the culprit of what is going on with me. LOL! nothing I can do about that.. I will present him with the list and see what he has to say. Maybe he does not even know of anyone with bvFTD.. It would not surprise me.. Maybe he has only read about it and only thinks it presents in a cirtain way. Maybe it is all medication related.. I do not know but I guess I question that because there was progression in my verbal memory and that all of this started after being on the meds for 5 years and you would think it would show up before that. Anyway I will see how things go.
The_Sun_Still_Rises
Posted: Monday, January 9, 2017 1:57 PM
Joined: 7/24/2015
Posts: 3020


Hang in there, Julie. 

Once I took my notebook a new doctor...in an effort get a new primary....and she blew me off for my notebook.  I was crushed.  She the last time I tried play the numbers game.  BUT...my PCA who with me said these wonderful words that I will share with you, "you will know the right doctor for you, when they appreciate and welcome you notebook" or in you case, you list. 

When I was in sales (as a teen), they had a sign up wall...with many lines of "no's" and then a "yes."  I took that mean, you might have go through 20 bad doctors get you one good doctor....and every bad one, one more doctor closer the good one. 

Lastly, the way eat an elephant....is one bite at a time. 

Hang in there my friend.  It will be what it is.  We will still be here, we will still love you no matter what happen....and the sun will still rise. 

<3


julielarson
Posted: Monday, January 9, 2017 2:59 PM
Joined: 9/30/2015
Posts: 1155


Thank you Sun,, I am going through some insurance stuff.. I hate it.. My rides got all messed up and I am waiting for a new insurance card to come in the mail.. I am so upset about this as it means that I may have to miss this appointment and get a new one.. I will see here pretty soon..
Iris L.
Posted: Monday, January 9, 2017 4:55 PM
Joined: 12/15/2011
Posts: 18509


Julie, It is not unheard of for your response to a medication to change after several years.  I was on a blood pressure medication for five years, then all of a sudden had a significant side effect from it.  I was disappointed, because it really controlled my elevated blood pressure, but I had to give it up. You have to be steady and persistent.  


If your sx are due not to dementia but to mental health-related causes, that would be a blessing.  But you must have some evidence to this effect.


Iris L.


The_Sun_Still_Rises
Posted: Monday, January 9, 2017 5:57 PM
Joined: 7/24/2015
Posts: 3020


OMG, I hate when they mess with insurance.  I will keep fingers crossed that you no have change you apt. 

We set for the same thing here soon.  We had race get baby SMRT'd (state medical review team declare her disabled)....because our main MA insurance carrier no keeping contract the state.  The problem is, many the baby's services are based solely on that insurance company - ugg.  We are HOPING that my having her get the disability MA....and that the insurance company will keep her based on that.  The other large carrier did that.  They got out bid one year (thank's f'ing capitalism) and dumped all MA people our state (only keeping the disability ones)...then, this numbnuts company who won the bid....this year realize that they bd more low and no make profit (ya think?!), so they dumping everyone again!  Then the MA office lie us, say that they HAVE give us a 6 month notice (which a lie)....but whatever, what can one do.

So it a scary time us. 

The waiting is so hard.  I recall a Dr Suess book for older age...about going the waiting place where you wait in line in order wait in line.  That what get dx'd remind me of. 

<3


julielarson
Posted: Tuesday, January 10, 2017 8:43 AM
Joined: 9/30/2015
Posts: 1155


Iris, yes it would be a blessing if it is not permanent MCI due to the medication. Lets hope if it is the meds it is not permanent.

 

Sun, yes insurance sucks sometimes.. Now I am waiting to hear about getting a ride to the appointment. Oh joy!


The_Sun_Still_Rises
Posted: Tuesday, January 10, 2017 1:15 PM
Joined: 7/24/2015
Posts: 3020


How you doing this day?  Are you painting?  Are you feeling better things?

<3


julielarson
Posted: Tuesday, January 10, 2017 2:01 PM
Joined: 9/30/2015
Posts: 1155


Sun, I am making an apple crisp right now.. I will venture out to a friends house later after the crisp is done.. I have not painted in a while.. I do not feel like doing it really.. Not sure I will but maybe I will later this week.

 


Iris L.
Posted: Wednesday, January 11, 2017 12:35 AM
Joined: 12/15/2011
Posts: 18509


A word about not feeling like doing something.  I call this feeling, the "don't want to's."  As in, I don't want to do anything (that I used to enjoy doing.)  


I have discovered that I can overcome the "don't want to's" by mindfulness.  I break an activity down into steps, and tell myself I will just do a few steps, just to get started.  Often, once I start, I can continue, and it's not so bad.  I won't say that I enjoy it, just that it's not so bad.  But at least I accomplished a task.


In my case, I think of my illness as as illness of "don't want to's".


Mindfulness is not 100% effective because I have to remind myself to be mindful.  But that's okay.  I don't beat myself up if I'm not successful.


Iris L.


The_Sun_Still_Rises
Posted: Wednesday, January 11, 2017 7:03 AM
Joined: 7/24/2015
Posts: 3020


Mmmmm apple crisp....yum.  I have no been able eat apples for many years now...and miss them. 

I have been working on sewing...I was never much a sew-er (skills of a 10 year old), but I have make some over suits for the baby wear in the house stay warm (also, because I can no figure out how find someone I can pay sew them for me the way I want them).  We have layer the baby now, and put polar fleece on her....but this drive her sensory issues nuts....so JoAnn Fabrics had a huge sale Black Friday selling flannel and polar fleece for like $2 a yard....so I bought a bunch thinking I would make a few suits of multi layers polar fleece with flannel on inside and out, so all she touch is soft.  I have sat with it since then filled with anxiety about it because I really am a crap sew-er...and because I don't have a pattern.  But, turns out....if I do it a night, when everyone on bed....when my brain no think any more....I can do things.  It used pleasantly surprise me and amaze me what I can still do....now it kind of freak me out.  Like I made a flannel suit for her little dollie....that actually turned out really well.  Anyways, that my creative ventures lately. 

I hope you had a nice visit with you friend. 

<3


julielarson
Posted: Wednesday, January 11, 2017 10:45 AM
Joined: 9/30/2015
Posts: 1155


I find that I do not enjoy doing art anymore so I figure why do it? Sun that is great you are making your Grandbaby those pieces of clothing for her. I am really reconsidering about my friend being my friend because she is very dysfunctional and seems to like it that way. I do not know how to handle it anymore because it is taking away from me time and time again. I have problems but I do not revel in them like she does.. I have made another friend here and I think I will put more energy into that friendship. My other friend needs therapy badly but she never makes the calls to get herself into therapy like she should. There are just too many things that I find I can not overlook anymore.. I feel really judgmental about this but I have tried for about a year now giving her sound advice that I would give to anyone I am close to especially when she is reaching out to me for that advice that never gets taken.  I have played counselor to her and that is not my place and I find it uncomfortable. So I guess it is time to stop. I hope everyone is having a great day.. We have snow here and it is still coming down out there.
Iris L.
Posted: Wednesday, January 11, 2017 1:53 PM
Joined: 12/15/2011
Posts: 18509


Julie, I am sure you already know this, but you cannot solve another person's problems.  You can be a sounding board, but don't take on her issues.  Protect yourself, because otherwise, they will become YOUR issues.  


How was the apple crisp?  I'm sure it was yummy!


Iris L




julielarson
Posted: Wednesday, January 11, 2017 3:31 PM
Joined: 9/30/2015
Posts: 1155


Iris, she makes it hard not to make her problems mine..but I think staying away more often will take care of that.. Yes the apple crisp is good.. I am getting good at making it.. This is my fourth one this year.. I love the stuff...
The_Sun_Still_Rises
Posted: Wednesday, January 11, 2017 4:35 PM
Joined: 7/24/2015
Posts: 3020


I find as my brain go, it really hard me wash things off and walk away.  Stuff just stay there...going round round my mind...make it so I can no sleep, I keep waking up thinking what should have said, or finally understanding meanings of what was said.  And it like that weeks....literally weeks. 

Sometimes, yes, you just have let go of people. 

Sorry, about you friend who no so much a friend. 

<3