Waiting and waiting to finish last Dx test

Tom Huff

I see so many here who have been newly diagnosed, and I truly hope you can all get the support you need.

I have had all the medical Dx tests—MRIs, biomarker blood work, PET scan. They all point to early stage ALZ, but I still need to have the comprehensive neuropsyche evaluation, but I need to wait until late March to finally get that appointment (1 year after having the neurologist's order).

I am very self-aware and know I have many of the memory symptoms described in the materials here. They seem to fall on the higher end of MCI.

My question for all of you fellow impaired folks is whether you need an actual diagnosis before you can utilize Medicare Advantage or my long-term care insurance to set up caregives for my declining brain.

Thank you very much for reading this, and happy holidays to you all. <3

Susancd

Dear Tom,

I sympathize with your frustration regarding the timeline. I first contacted a neurologist 2 years ago and it took 9 months to get the first test. Even after meeting him, he felt I wasn't really cognitively impaired. I really had to push to get further testing. I was very aware of my mental decline. He did order the tests and the results were clear that I have mild cognitive impairment (MCI). After 2 years, I just found out today that the treatment won't start for another 2 months. In the meantime, I am very aware of the increasing decline. I'm sorry I can't help you with your question, but Just wanted you to know there are others out there dealing with this disease and the slow pace to get to some help.

SCD

Dorse

Amen to Susancd. I have had the worst 5 months since diagnosis. I have often wished I had never mentioned this.

Larrybee

Tom, you said that you have been involved with scientific research so you might be interested in this. Take a look at the Emory University FDA montelukast Alzheimer's clinical trial on clinicaltrials.gov. The trial was set up so that the treated group was to take 20 mg twice a day of the anti-inflammatory asthma drug montelukast for one year. The final results submitted in 2024 indicated that the placebo group showed cognitive improvement after one year and the montelukast treated group showed decline. My contention is that the trial was sabotaged by switching the montelukast and placebo dosages between the groups before the start of the trial. I notified the FDA Office of Scientific Investigations in January 2024 but they do not appear to have investigated it. Please take a look.

Emory clinical trial
https://clinicaltrials.gov/ct2/show/NCT03991988

The NIH Toolbox Cognition Battery tests showed the montelukast treated group went from 35.4 to 33.0, which indicates a cognitive decline. The placebo group went from 35.4 to 37.3 and showed improvement, not something you would expect to see. Further, cerebrospinal fluid (CSF) amyloid and tau levels declined in the placebo group, positive indicators that were also not expected. There were no serious adverse events in either group.

By way of comparison, Biogen's FDA approved drug lecanemab (Leqembi) never showed cognitive improvement, but only showed a slight slowing of decline. The placebo group in the Emory trial showed cognitive improvement which indicates that the montelukast dosages were given to the placebo group.

I have been taking 10 mg montelukast multiple times a day for extreme mental fatigue since 2016. I got completely back to normal within one week after I started this treatment. I am presently taking 20 mg three times a day. I am a retired American living in Ghana where I can buy as much montelukast as I need without a prescription. My mother passed away with Alzheimer's and I believe that my taking montelukast multiple times a day has prevented me from going down that path. My website is www.montelukast-repurposed.org. I have more evidence there on who may have been envolved in the sabotage.

Another clinical trial in Canada using 30 mg montelukast twice a day showed cognitive improvement in its preliminary results but was soon forced into bankruptcy by its largest creditor before the completion of the final results. I think the same pharmaceutical company was involved in the sabotage of both of these montelukast clinical trials.

https://alzheimersnewstoday.com/news/montelukast-oral-film-aids-cognition-mild-moderate-alzheimers/

I found out about montelukast as a possible treatment for Alzheimer's in 2016 from this "The Guardian" article.

https://www.theguardian.com/science/2015/oct/27/asthma-drug-could-rejuvenate-ageing-brains-study-suggests

Dorse

I hope I'm still a part of this group. It seems I'm not getting very many messages in my email as before? I have recently been diagnosed with Alzheimer's. Thank you

GEH

Hi Dorsey,

Yes, you are still part of the group. Happy Holidays to you and your loved ones. Sometimes it just gets a little quiet here in our message board. But we are all still here for you. Reach out if you want to chat or share thoughts. Usually, at least one of us responds. Wishing you only the best for the upcoming New Year. 💖