Where to start??

I am sorry you have to walk this road and take this journey with those of us here.

I speak only from my experience so far. It took us nearly two years to get a diagnosis; my DH saw three neurologists (one who made an incorrect first diagnosis) the second told me I asked too many questions and asked us to leave and finally the third neurologist (at a nationally ranked Memory Clinic 1500 miles from our home) was thorough, kind and candid about what my DH was facing. DH underwent an MRI, lumbar puncture and full neuro-psychology testing to reach a conclusion of Alzheimer’s.

I hope your diagnosis journey is easier. However try to be prepared that a diagnosis is most helpful in eliminating the treatable causes of the changes your LO is experiencing thus far. If your LO clearly has ALZ, you may find the neurologist cannot provide any meaningful, certain treatment in the beginning stages of MCI.
Most likely there will be a “wait and see” time and then “let’s try, Memantine and/or Donepezil” medication trial. A geriatric psychologist might be most helpful for the emotional issues like anxiety or depression.

Again, I hope for the best for you. But many of us here have had to cross dry deserts of difficulties getting an accurate diagnosis. Early stage treatment plans present deserts to cross as well.

Ending on a positive note—-on this forum you will find, caring, compassion, good and practical advice, and emotional support—-you have come to a well to help quench your thirst!

I think many of us can say we’ve had the exact same issues. Many of us have waited six months or more for an initial consult with a neurologist. My DH has seen two neurologists. First was thorough and kind but his main message was Alzheimer’s is a fatal progressive disease with no cure so be prepared. We moved to a new state and the new neurologist was outright rude and dismissive. Our new GP has been the most helpful.

This community has been more helpful than anything or anyone else. You’ll hear from everyone to see an elder lawyer immediately. It’s a very long journey and you’ll go through many stages and changes. Best of luck to you! Keep posting!

After reading everyone else’s journey, I feel fortunate ( if that is even a thing with this horrible disease). We went to PCP almost 1 yr ago. She did the clock test and another assessment, put him on aricept scheduled MRI and sent us to neurologist and neuropsych consult. Neurologist took few months but had EEG and PET done. We then had our diagnosis, the neuropsych took the longest to get appointment but was most definitive with cognitive abilities and helped getting SSDI. Hindsight my DH was further advanced than I realized because he had exceptional coping mechanisms and that might be why there was no questioning cognitive decline. Our neurologist did send us to a major academic facility for second opinion, but it was the same conclusion. Now he just sees the PCP and one more visit with neurology, I basically want that incase need medication in the future. I literally read this forum to see what is next in store as I go down this rabbit hole. My DH has EOAD and in his 50’s.

Hello and welcome. I think you’ll find this group helpful and caring. And, frankly, more knowledgeable than many healthcare providers.
Yes, getting a diagnosis is challenging. The beginning process is more a case of ruling things out rather than definitively stating it’s a certain type of dementia. It’s not easy. I’d keep the second appointment until you know if the first neurologist will work for you. Neurologists are part of the diagnostic team. A neuropsychiatrist (better yet a geriatric psychiatrist) will be important for getting the medication right. We had mixed experiences with neurology but found an excellent geriatric nurse practitioner who was part of a larger memory care practice. She was experienced, understanding, and kind. Plus she was able to pull in other specialists from her practice like social workers and geripsych.

Deep breath. You’re going to need to get your finances and legal documents in order. This is critical early on so your partner can sign things while he can. A good elder law attorney will know the long term care options in your state. You really need to get this arranged sooner than later.

We’ve been collecting useful information and posts in a group on this site. You may find it useful. Keep posting here and asking questions. This people in this forum will be there for you.

https://alzconnected.org/group/32-new-caregiver-help

I have a similar story. The primary care doctor did not take me seriously, and he released my husband back to work saying that he needed a routine and he was just depressed. His work is very technical in nature and safety is the utmost priority. Of course work sent him back home. I can't even remember how many months it took to actually get a referral for a neurologist. The neurologist thinks that he has early onset AlZ rather than alcohol induced dementia. His last day at work was March 2023, and it took over a year to get some answers. He is 54.