Still no diagnosis.

Started by

My mother started having issues right before Xmas. We went to a neurologist last month and are waiting for cognitive tests to be set up before the doctor will make a diagnosis. He suggested maybe FTD or stroke. Anyway still no cognitive tests and my mother now wants to die. She is sure she has Alzheimer's even though the doctor said it was not that. She sits at home all day and thinks of all the weird things she's done over the past 10 years which really aren't that weird. Her memory is good, her speech is good, etc. The only issue is that she thinks that she is imagining everything, that is it. Has anyone else had experience with this symptom?

27 Comments

Arretsax, how old is your mom? When you say her symptom is that she's imagining everything, do you mean she has a sense of being disconnected from reality or like her physical surroundings are unreal? Or something else? Is it a constant feeling she has or intermittent? It sounds like a symptom of temporal lobe epilepsy, but if she's never had neurological symptoms before and is older, it is probably not that. I only have read about FTD on this site and don't have experience with it, but I'm assuming there's an overlap between FTD and epilepsy (the disturbances to perception.) I feel bad for your mom. That sounds very uncomfortable and frightening. I hope her doc comes up with some answers soon! I have two people very close to me who have temporal lobe epilepsy and they both suffer from anxiety as well. It is very isolating to have really intense experiences that nobody else in perceiving. The Epilepsy Foundation offers a support group called Project Uplift. I wonder if there is something similar to that for FTD patients, or if one of their counselors could talk to you and your mom about how to handle the anxiety that comes with the temporal lobe disturbances?
She is 65. Basically she thinks everything she does is in her imagination. It seems if we can distract her she does much better. If i ask her what she did today, she will tell me all the things she did, but follow it up with "but we all know thats just my imagination." I've looked online and this doesnt really se to be a symptom of FTD.
I think you should be seeing a psychiatrist rather than a neurologist. And the one you ARE seeing can't be very competent if he/she hasn't ordered brain imaging to rule out stroke, tumors or other acute conditions.
I agree unfortunately this is the only one in our area that will take medicare paients. We asked for a referral anywhere and was told the wait was 6 months average. We also asked the neurologist for a referral to a psychatrist because she wants to kill herself. He said he doesnt want to do that until after the cognitive tests because he doesnt want her taking anything until he gets those tests back. I really have no idea what yo do.
Oh and they did an MRI, but wouldnt diagnose until cognitive tests.
Ok, call the office, have the tests set up. Actually make the follow-up appointment, and get the MRI results explained, in person! At the very least.

I was reading this, and it occurred to me the doctor or staff said something to give her the impression that they felt it was in her imagination.

The doctor's advice to WAIT could lead to negligence due to a delay in treatment if it is psychiatric and untreated.. The 6 months waiting period would be half over.
What are you waiting for?
Take her t a local teaching hospital. Far away may be necessary.

Has this been ongoing through your mother's life, that people don't believe her, or is this new? Even long-term psychiatric patients can get a physical illness, don't you think?
It all started at xmas. She just thinks everything she does is in her imagination. At one point she thought she was actually instutionalized and she is just imagining being home. We have called everyday to get the tests set up. They have to be set up by the neurologist. They say every day " they havent called you yet"? We cant go anywhere without a referral. We have even offered to pay ourselves instead of medicare and that is not allowed if a dr accepts any medicare patients.
Arretsax, I'm really sorry. That is really odd, and must be really disturbing for you and her. Sometimes people with dementia will repeat phrases -- I don’t know what the name for that is, but they will habitually say a phrase and it’s like a verbal tic. However your mom seems like what she is saying matches her feelings and that she is truly bothered by it.

Derealization and depersonalization are sensations that can be symptoms of temporal lobe epilepsy. These symptoms can occur with severe anxiety and panic attacks as well. Is your mom on any medication that could cause neurological side effects? (You would think the dr ruled that out but you never know.)
I just posted and saw the rest of the responses. Sendmetohelp and Cwillie are right about ruling out something more accute, especially if it is something that started suddenly. Does she have a decent primary doctor who can get on the neurologist's back? I am so sorry they are not taking your mom's issues seriously.

Keep the conversation going (or start a new one)

Please enter your Comment

Ask a Question

Reach thousands of elder care experts and family caregivers
Get answers in 10 minutes or less
Receive personalized caregiving advice and support