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Just diagnosed with early onset ALZ at the age of 48
Mimi S.
Posted: Friday, June 29, 2012 2:02 PM
Joined: 11/29/2011
Posts: 7027


Nie wrote:

So, I have been trying to figure out if I an take another short term leave from work and it looks like its done on a "rolling year".  Meaning:  I cant take another until Sept. That;s what I was afraid of.  Any other leave will allow them to fire me and I lose benefits.  

 

I simply don't have the funds to go see a lawyer for advice.A LOT OF LAWYERS DO NOT CHARGE FOR THE FIRST HOUR. TRY CALLING THE HELP LINE 1-800-272-3900, BUT I DON'T KNOW HOW MUCH LEGAL ADVICE THEY CAN GIVE. I also don't know if I can hang on until Sept.  I doubt it.   Only think I can think of is that maybe if I go straight to long term disability..I'm covered?  I would just have to get through that 3 months of wait time before it kicks in.  But I need a solid diagnosis!!  

 

I am really overwhelmed these past weeks trying to understand the process.  I am still waiting for the PET and SPECT authorization as well.  What if they show nothing?  The doctor said it doesn't always show EOAD.  

IF THE PET WAS WITH THE PITTSBURG COMPOUND, IT MIGHT SHOW, MANY SCANS DO NOT SHOW THE EARLIEST STAGES.

 

Am I disgusting for hoping it shows a small brain tumor or something they can pluck out so I can have my life back eventually?    

NO YOU ARE NOT CRAZY. YOU KNOW SOMETHING IS WRONG AND YOU WANT AN ANSWER.

 

My humor is failing me today just when I need it most.  Going to call the doctor and see whats up with those authorizations.  So tired of busting into tears when I find out I've made some big error, or I cant add, or I cant remember whats I'm suppose to be doing.   SO sick of it.  
SOUNDS LIKE YOU COULD USE A WALK, UNLESS IGT'S TOO HOT OUTSIDE.

 
Sorry for the whining post.  It's this or scream/cry!   Thanks for being here.
THAT'S WHAT THIS IS ALL ABOUT. TAKE CARE!!!!
Hugs to all.

SOUNDS LIKE YOU COULD DO WITH A NICE WALK,UNLESS IT'S 90PLUS OUTSIDE.



Iris L.
Posted: Friday, June 29, 2012 2:33 PM
Joined: 12/15/2011
Posts: 17723


Nie wrote:

 

Am I disgusting for hoping it shows a small brain tumor or something they can pluck out so I can have my life back eventually?      

 

My humor is failing me today just when I need it most.  
 
Sorry for the whining post.

Nie, stop beating yourself up!  You're facing one of the most devastating diagnoses a person can face, especially a young person.  You're going to be experienceing a multitude of emotions.  You're going to be on an emotional roller coaster.  The only way to handle these feelings is to allow them, without judgement.

Post whenever you can.  Often the members of this message board may be the only ones who listen without judging you.  We care and understand!

Iris L.

Nie
Posted: Sunday, July 1, 2012 5:00 PM
Joined: 5/30/2012
Posts: 66


Hi Mimi and Iris

Thanks for the reply.  I'm hanging in there, still waiting for the PET and SPECT authorizations.    I have to try to take it day by day.  Ahh  if it was only easier!!


forgetful
Posted: Wednesday, July 4, 2012 9:00 AM
Joined: 7/4/2012
Posts: 3


Hi All,

I am in the early stages of finding a diagnosis. I saw the neurologist about 2 years ago, I guess. He took an MRI at the time said that there was a benign tumor and no worries. Now he says his notes say two dark spots on the MRI. My symtoms have worsened and I am scared. I feel like I am hiding behind a big white curtain and afraid to come out. The neurologist says there is something called "_____", can't remember the name but is basically circuit overload. I have a lot going on in my life and maybe it is just too much for my brain to handle. To me this is ludicrous!!  He has referred me to a Neuro Psychologist for testing. He questions depression but I have been on Medications for depression for a long time. I lost my 57 year old brother to car accident in October 2011 and my mother had to go to a nursing home in December for a fractured hip and stayed for dementia. 

 Currently I am on vacation so I would hope that the symptoms would improve but thus far I don't see a change. Word find is the hardest. And also recent recall of events is becoming harder to disguise. 

Where do I begin? I kinda feel that the neurologist is a little pompous and is just blowing me off. Why wouldn't he order another MRI to review any changes. 

I just want to go to a neuro psychologist that will do the full battery of tests, not just 3 questions. How do I find the right match in Colorado? He gave me the name of a person but I don't remember who he was. I think they gave me a card but when I saw a card it was my neurologist name...unless he gave me the wrong card. I have been meaning to call the neurologist to get the name of the person but keep forgetting.

Please help!!! I am scared and feel all alone.

Cindy


Nie
Posted: Wednesday, July 4, 2012 12:52 PM
Joined: 5/30/2012
Posts: 66


Hi Cindy, Sorry you are having to go through all this.

forgetful wrote:

Hi All,

I am in the early stages of finding a diagnosis. I saw the neurologist about 2 years ago, I guess. He took an MRI at the time said that there was a benign tumor and no worries. Now he says his notes say two dark spots on the MRI. My symtoms have worsened and I am scared. I feel like I am hiding behind a big white curtain and afraid to come out. The neurologist says there is something called "_____", can't remember the name but is basically circuit overload. I have a lot going on in my life and maybe it is just too much for my brain to handle. To me this is ludicrous!! 

I went through my first neurologist and felt like he blew me off too.  Maybe you can request a second opinion from a new neurologist?

 He has referred me to a Neuro Psychologist for testing. He questions depression but I have been on Medications for depression for a long time. I lost my 57 year old brother to car accident in October 2011 and my mother had to go to a nursing home in December for a fractured hip and stayed for dementia. 

Its good he referred you for the full testing.  Put a note on your phone to call them back and read your chart. Or ask a friend to remind you to call until you do it.  They should be able to give you that name.  Also if it went to insurance for authorization, you should get some notice in the mail when its approved and it gives the Drs name and number.

 Currently I am on vacation so I would hope that the symptoms would improve but thus far I don't see a change. Word find is the hardest. And also recent recall of events is becoming harder to disguise. 

If you can, write down the things you notice happening and dates. Write down things other people tell they notice too.  Its much easier to take those notes with you to the doctor than to try to come up with the words later. 

 

Where do I begin? I kinda feel that the neurologist is a little pompous and is just blowing me off. Why wouldn't he order another MRI to review any changes. 

I just want to go to a neuro psychologist that will do the full battery of tests, not just 3 questions. How do I find the right match in Colorado? He gave me the name of a person but I don't remember who he was. I think they gave me a card but when I saw a card it was my neurologist name...unless he gave me the wrong card. I have been meaning to call the neurologist to get the name of the person but keep forgetting.

Please help!!! I am scared and feel all alone.

Cindy

You are not alone.  This forum has many experienced people who are full of information.  You are among friends now and have support.  There is also a helpline you can call -  24/7 Helpline at  1-800-272-3900. They should also be able to give you some support and direction.


Also, you may want to start a new thread introducing yourself here. Just copy/paste what you wrote in your post. More people will see your topic and you will get quicker answers.


Big Hugs, keep posting. It will help.



Iris L.
Posted: Wednesday, July 4, 2012 2:30 PM
Joined: 12/15/2011
Posts: 17723


Welcome to our online support group, Cindy.  You are not alone any longer.  Any time you want to "talk", just come here and post.  We are here for each other.

When I had my first appointment with my neurologist, he brushed me off.  I felt so defeated I almost became suicidal.  I was desperate because my functioning was so poor, but he did not seem to believe me. I happened to meet an educator from the Alzheimer's Association, and she encouraged me to go back and insist that the doctor take me seriously. 

I returned and he began an evaluation, including neurocognitive testing, which showed that I did have deficits.  Then he took me seriously and prescribed medication.  I still see this neurologist today, and I'm very pleased with his medical care.

Like Nie said, write down your observations about yourself. Include observations from the people around you.  Read the section on the main web page, alz.org, regarding the diagnostic process.  It is important to rule out the many other medical conditions that can cause dementia.

Take things step by step.  The more you know, the better you will be able to handle what is before you.  Come back and post often. Feel free to begin your own thread so many members can see and respond to you.  Sometimes new posts at the end of a long thread get overlooked. 

Iris L.


bobostein
Posted: Wednesday, July 4, 2012 8:38 PM
Joined: 7/4/2012
Posts: 1


Thanks for this post. i called the 800 number to see if there is an early Alzheimers support group in my area. I have been diagnosed with mild cognitive impairment so far but had a spinal tap and hopefully will get the results back tomorrow to see if it's early alzheimers. I am on aricept 10mg and now on disability. Does anyone have any experience with confirmation by spinal tap? Thank you.
Iris L.
Posted: Wednesday, July 4, 2012 11:57 PM
Joined: 12/15/2011
Posts: 17723


Welcome to our online support group, Bob.  I'm sorry you have this diagnosis.  My diagnosis is cognitive impairment not otherwise specified and I'm on Exelon patch and Namenda with good results.  I did not have a spinal tap.

What other testing did you have besides the spinal tap?

Please feel free to begin your own thread by clicking on Add Topic on the Younger Onset AD board.  Come back and let us know the result of your spinal tap tomorrow.

Iris L.