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Been away for awhile, received more accurate diagnosis.
frustrated047
Posted: Tuesday, April 24, 2012 7:26 PM
Joined: 12/18/2011
Posts: 36


I have not been on here for a month or two.  Hope everyone's time has not been too difficult.  I did have a PET scan which showed three area's affected by Lewy Body. 

 

So with that, other testing and after being seen by the neurologist for awhile and him getting to know me it's most probable that I have LBD.  I've been really having a problem with my blood pressure/heart rate. 

 

Are there any others on here that have LBD an problems with this?  Hope everyone's having a good evening!


Lisa428
Posted: Tuesday, April 24, 2012 9:48 PM
Joined: 12/5/2011
Posts: 795


Dear Frustrated,

 

Welcome back!  I am sorry about your diagnosis.  It all sucks!

 

There are people on the boards with LBD and some who have taken care of LO's with LBD.

 

I'm sure they will be posting soon.

 

Just wanted to say hello and wish you good luck.

 

Would you like to share more of your story?  We're all good listeners.

 

Peace and Hope,

Lisa


Iris L.
Posted: Tuesday, April 24, 2012 10:32 PM
Joined: 12/15/2011
Posts: 17952


Welcome back, frustrated.  A couple of members had LBD from the old board. 

 

Please stay in touch. 

 

Iris L. 


frustrated047
Posted: Wednesday, April 25, 2012 10:43 AM
Joined: 12/18/2011
Posts: 36


Thank-you Lisa428 and Iris L.  

 

You could not be any more correct Lisa428 when you say "it all sucks".  The roller coster of symptoms and emotions are terrible.  Hope everyone enjoys their day!


Lisa428
Posted: Friday, May 11, 2012 10:34 PM
Joined: 12/5/2011
Posts: 795


Hi Frustrated,

 

How are you doing?  Please, share with us what is going on with you.

 

How are you feeling?

 

We are good listeners.

 

I know there are others out there that suffer with your disease!

 

People with LBD or Caregivers of LBD  patients,  please come and post here.

 

Frustrated needs to talk.

 

Good Luck.

 

Remember, there's always the toll free 24/7 Helpline @800-272-3900.

 

Peace and Hope,

Lisa


Mimi S.
Posted: Saturday, May 12, 2012 5:01 PM
Joined: 11/29/2011
Posts: 7027


Hi Frustrated. Thank you for much for sharing. If you put Lewy Body Dementia in your title line, try posting again, both here and on Caregivers.

Please keep in touch and let us know how we can help.


Iris L.
Posted: Saturday, May 12, 2012 7:23 PM
Joined: 12/15/2011
Posts: 17952


Lorene, try Mimi's suggestion about putting Lewy Body in your subject line on this board and on the other boards. 

Are you getting enough sleep?


Iris L.