Still no diagnosis.

That is very good news!

So very glad to hear this!

Thanks everyone. My mom is doing well in fact this is as well as she has been for 2 months. Im not sure what the path forward is, but hopefully we will figure it out soon. Thanks again for all the support.

Arretsax, Sorry this happened, and that it has gone on so long. Your Mom must have been suffering so much.
Thanks for telling us. How have you been able to cope?
Keep on top of the search for the diagnosis, the proper treatment, and good care for Mom.
Then, try to understand that this was not personally directed at you, it is about her pain, incorrect thinking, and temporary despair.
Glad you are getting help.

Arrt, since she is now in the hospital she will be there for awhile since it is ICU. One thing many do not know is that you can now use this to get your mom the help she needs. You can refuse to bring her home, talk with the hospital social worker and they will find appropriate care for her to be discharged to.

I am so sorry. Was this an attempt? Maybe a cry for help? Hope that the medical pros figure out what is going on.

Oh my! Wishing you and your mom a good outcome! Make sure they have all the records from previous testing, and no discharge without answers!

Once i realized, several years ago, that i was within my rights as Mpoa, to not " take delivery" of mom until all her issues were resolved, i was able to act in a much more assertive manner. Normally, i just said yes to doctors.

So instead of " you'll follow uup with x,y and z", we got the necessary tests done "in house"

Oh no Arretsax! I am sorry too! I hope they are able to straighten things out quickly and get your mom feeling better. Your poor mom.

Arretsax, do you mean she took some pills in an attempt to end her life? If so, I am SO sorry it came to that. Does the neurologist practice at this hospital? Maybe he can consult and explain what is known to date. Or at least that will be in her medical history.

Please come back and let us know how this works out!

Actually we ended uo in the ER tonight she took pills. She is in ICU now. Maybe at least we will get some help now. Thanks for all responses ans support

Glad, that is a good suggestion! Maybe starting out at the primary care physician's office will help, since the neurologist may have reported back to the referring doctor.
Yes UTI!

Has she been checked for a urinary tract infection or had a complete blood count done? UTI's commonly cause sudden changes in behavior and cognition.

We don't know exactly what the neurologist has and hasn't done. For example, he did an MRI and that wasn't mentioned in the original post. I'm not sure we have enough information to judge his competency.

An MRI can rule some things out, but it really isn't a definitive diagnostic tool for dementia. And not giving treatment, such as meds from a psychiatrist, until further tests have been done seems to me to be prudent and responsible. Some drugs can definitely make some conditions worse.

If there is a six-month wait to see another neurologist in your area, that may explain why setting up the tests is taking so long. All of those over-busy neurologists are sending patients for cognitive testing! The testors are backlogged, too.

Sounds like the doc may have an idea of what this could be but wants some confirmation before he brings it up. He knows it is not ALZ.

On a slightly different note, I tried to find a geriatric psychiatrist around here. First, almost none take Medicare. (Medicare reimbursement for psychiatrists is absolutely pitiful.) And the few that did were several months out for taking appointments. You may not get anything resolved more quickly by going to a psychiatrist.

Is your mother saying general things like "I don't want to live like this" or "I wish I were dead" or is she actually thinking about suicide? If you take her to an ER and she tells them she wants to kill herself, she will get attention now, not in six months or after there is an opening for cognitive testing. That does risk having her be given a drug that may make the underlying condition that the neurologist is trying to identify worse. But there would really not be anything worse than suicide, would there?

I don't hear any evidence that the neuro isn't taking your mom's case seriously. But I would stay on the case with the neurologist. Stay polite and understanding of the obstacles his office has to overcome, too. But be persistent. "My mother is very disturbed and is talking suicide. Could you get our name on a list at the testing facility in case they have cancellations? We could get there on short notice. I know you are doing your best, but if she brings up suicide again we'll have to take her to an ER. Is there any other place that could do the cognitive testing sooner?" Again, assume they are on your side and don't be argumentative. Just keep reminding them of how eager you are for the doctor to be able to move forward.

Meanwhile, if she is better with distractions, keep her distracted! And you might say something like, "Oh, good news! The doctor's office called today and said you definitely don't have ALZ. They had someone else look at the MRI and other tests and they can rule that out!"

Keep us informed. You are in a really tough spot, and we care!

I often go to the MRI lab who prints out a copy right then, whenever we need it.
This does not always work at every office and I have to take the patient with me. No one cared that it saved an unnecessary x,-ray!

Even with my intervention, the doctors still erroneously believe that 800 mg. is the only treatment for back pain. I disagree, but then I am nobody! Even though I explained that with asperger's he cannot take that much medication, so we ended up with 90 tabs plus what was on hand 60 tabs! (Yeah, you try controlling a fully autonomous adult male when the pharmacy automatically calls daily until you pick it up, this after the doctor said he would cancel it). At least, to my knowledge, he doesn't take it. (Counting meds.) He can take Tylenol or 200 mg. Advil and that helps.

He starts physical therapy Friday, after both of us trying for two weeks. See? Meds not the only treatment for back pain. He saw a chiropractor 2x this past week, have not met his deductible, so this cost our budget, too much. He failed to listen early in January.
I just am not able to continue this financially. Soooo very frustrating. imop.

So, what I am suggesting, is that you go direct to the MRI place, get the MRI results yourself, take it to any doctor. Call Medicare to get an emergency visit authorization. Really.

When she says she is going to kill herself, call 911 and get her to the ER for a 72 hour inpatient psychiatric evaluation.

Eldery women get notoriously poor treatment from a lot of health care professionals. Your mother appears to be in terrible psychic pain ( she wants to die!). I think i would be thinking about showing up at the ER at the nearest teaching hospital. Do you have a copy of the MRI?

Your mom had an mri and no one has given you a preliminary "read"? I'd be sitting in that doctor's office tomorrow, asking what s/he is ruling out from the result.

I agree. Sometimes, you have to get on the phone and/or go to their office in person and be very insistent. I've said things like, "This is an urgent matter and it must be addressed immediately. How are we going to do that? No, that's too long. There has to be an earlier date. We can be here at 8:00 a.m. any day. What about tomorrow?" I then call back every day to see if there has been any cancellation that I can take for an earlier time.
Also, I don't wait on medical offices to contact me, since many are disorganized and often get the phone numbers wrong or just forget.

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.

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.)

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.

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?

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?

Oh and they did an MRI, but wouldnt diagnose until cognitive tests.

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.

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.

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.

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?