Why so hard to get diagnosed?!?

Thank you for replying! I feel so alone! I have seen a neurologist for an MRI and a neuropsychologist for a neuropsych eval that the neurologist referred me to and I see a speech therapist for "cognitive rehab" that the neurologist referred me to. Everything was normal on the MRI and neuropsych eval and they are saying the cognitive rehab is for my ADHD difficulties. Those tests were over a year ago and I am noticing that I cannot do my job anymore, so I do not know who to talk to about that.

I do not want to wait until my deficits are measurable conversationally because by that point I should not be doing my current job. The tests they gave me are not sensitive enough for early detection, IMO.

Iris- Thank you for responding. Yes, I had a full neuropsych work up. I am self employed so I have no income if I don't work.

I have not had a blood test done for memory problems that I know of, just for hormones, thyroid, and normal panels. What blood tests should I be asking for? I am going to ask for a lumbar puncture.

I already have diagnosed sleep apnea, REM sleep behavior disorder and persistent limb movement disorder and a CPAP.

I am not on any medications that cause memory loss.

I don't drink or do drugs. What do you call the blood test for taus or amyloid?

Hi

So what are you doing as a result of your test results?

This is so hard! I was very happy to know that I had an appointment with my GP coming up and then a cognitive rehab session and then a sleep doctor visit the end of this month. But my GP told me before my appt that my insurance was not valid until February. I thought it was valid Jan - Dec bc I picked a plan and paid for it. NOPE! So I have no insurance this month.

I have been trying to get my taxes done for the last 3 years but when applying for health insurance with a disability they want a lot of documents and paperwork and I cannot get it all done and organized. Executive functioning has gotten worse and worse but because I have ADHD, I was not aware it was worsening.

I called my mom who is taking care of my dad with Alzheimer's and told her I was scared of what was happening to me: blanking out when driving and not knowing how to get somewhere, eating mostly just pomegranates 1 - 2 per day for the last month, starting to lose my temper with my dog and with children, pooped my pants in my car accidentally, cold toes and fingers and cold then hot clothing needs, like when you have the flu and the chills, medical bills piling up from forgetting to pay my health insurance last June, big changes in how gross I am able to tolerate my apartment. She told me that she needs my sister and I to be independent when I told her I am scared and need help.

I called our financial planner and told him what was going on and that I need help and he is going to call my mom and get her to set up a family meeting with a professional of some kind.

I found a geriatric specialist therapist and had first session with her on openpath.org, a counseling website collective. She was great and could not believe how much I am coping with.

When I have had coffee and worked out and have had my ADHD meds and have had a decent night's sleep then I sound and appear perfectly fine. But when you come in my apartment on a Sunday when I am not working and see behind the curtain, I am not doing fine. I guess the good thing is, if I have dementia, then it will get worse and I won't care at some point. I just don't want to neglect

my dog, crash my car or burn my apartment building down in the mean time.

Thank you! I think that is a good idea, along with asking for a lumbar puncture and blood testing. Thank you!