Where to start??

brupt30

I'm new to this community and struggling with the obvious cognitive decline of my DH. We're just beginning this journey and I'm a bit overwhelmed with the challenges of getting a true diagnosis and establishing the best quality medical team for his needs. His primary care doctor did not seem to take his symptoms seriously until I pushed him to do a "mini-mental" evaluation a few months ago, which my DH failed completely. We have since gotten an MRI and have been waiting for an upcoming appointment with a neurologist to get the findings. When I was searching for a neurologist back in August, I made the earliest available appt. in December with a highly recommended neurologist (the rest of her group was not available until next June!); however, I found another neurologist (who treated one of my relatives) who was available in October. Unfortunately, the doctor's office rescheduled the October appt. for late November, so now I'm tempted to take him to both neurologists to get their feedback since I never canceled the first one. Has anyone had this issue? Can anyone tell me whether a neurologist or a neuro-psychiatrist would be better for someone with memory loss/anxiety/cognitive decline? I will also be searching for a more pro-active primary care doctor.

WIGO23

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!

clarinetist

You could try the first neurologist, and if you like him/her, cancel the second appointment. My husband saw a neurologist who evaluated him and then referred him for a neuropsychological exam. The exam was four hours long, and my husband found it grueling, but it was able to show his level of cognitive impairment. We then took the results back to the neurologist. He prescribed a drug that helped improve his Alzheimer’s symptoms, but didn’t keep the disease from progressing.

AlzWife2023

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!

trottingalong

This is our journey. My DH went through the grueling 5 hour testing with neuro psychologist. Tests forwarded to neurologist at a highly rated Alzheimer’s clinic 7 hirs from us. Went to appt and they scheduled MRI. Inconclusive. Diagnosis of MCI with Depression. We were told that time would tell if he had Alzheimer’s or not. He was sent home with new anti depressants. We were both deflated, hoping for a clear diagnosis. It was obvious something was wrong. This was 6 years ago. He has refused any further testing and I understand. It’s been a slow progression until more recently. It’s obvious he has what his mother, grandfather, 3 aunts and 2 brothers had. It is what it is. This is the best place I have found for caring, supportive people who understand and give a safe place for questions to be answered and a place to vent. Nothing is off limits here and compassion abounds. I’m sorry you are now a member of this club, but happy you found it.

beachbum

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.

trottingalong

https://alzconnected.org/discussion/comment/228800#Comment_228800

I think it’s saddest for families dealing with EOAD, for so many reasons.

Jeanne C.

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

blacksparky

https://alzconnected.org/discussion/comment/228800#Comment_228800

I have a similar story to yours. My DW was diagnosed October 2023 with EOAD. She had a successful business doing coding and billing for over ten doctors. One day in March 2023 she called me into her office ( she worked at home) and told me that she didn’t know how to do her job. I had to call all of her clients ( Doctors) and tell them that she was no longer able to continue her contract with them. We then started the long journey of Doctors visits and finally after neurologist, Neural physiological exams, we finally got a diagnosis from Mayo Clinic ( spent a week there going through Cat scans , bloodwork, MRI’s and spinal taps). The doctor told us that her Dementia probably started 6 years before the diagnosis. She was 54 so it probably started in her late forties. Looking back I now see that there were signs but didn’t even consider Alzheimer’s. We now are on the Alzheimer’s roller coaster trying to make the best of each day.

CarolinaWren

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.

jfkoc

I would keep all appointments.

Please read online (more that one article) about the diagnosis process. You did not mention lab work being done and it must be done to rule out treatable causes.

brupt30

Oh my gosh, I just did my first post last night and can already tell that this forum will be a godsend. Thank you all so much for your thoughtful and kind responses. I am not looking forward to this journey but feel blessed to have this kind of support.