Newly Diagnosed Physician
I am a 60 yo newly diagnosed with Alzheimer's. I am a retired Family Physician who noticed issues approximately 18 months ago and was diagnosed with MCI. I stopped practicing medicine and was given disability benefits. I am fortunate to have had that option but despite all my expertise the process of getting a definitive diagnosis was to say the least frustrating. Particularly as my insurance company kept delaying tests or denying them. Ultimately a spinal tap was done that was non diagnostic but "suspicious" per my local neurologist. He requested a PET scan and it was denied by insurance. I am fortunate being in the field and had access to the director of the Alzheimer's department at The University of Pennsylvania. I knew the spinal tap most likely was the answer but I needed to see someone to give me a final answer. After a 3 hour visit at U of P he came into the room and told my wife, brother and I that indeed I had Alzheimer's. I am currently undergoing Lequembi and plan on doing my best to be productive as long as possible. I have decided to share my journey as a physician with Alzheimer's through social media. I know what the ultimate outcome will be but I have always been someone who has called it like it is so I want to share how I will deal with this and hope to help others while trying to help myself. This is just the beginning of my Alzheimer's journey and hope to be able to share more here as time goes on.
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I am waiting on my MRI which is Friday 10/24. Waiting is the hardest part for me. I’ll be following your post to see how your doing
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I totally understand. Had mine this morning but no results yet.
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Totally understand, had mine this morning and still waiting for results.
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I'm an 83y/o husband, Dx with MCI 6 mo.ago. My wife of 58yrs has always been strong willed, She is adjusting slowly. She says " I don't know where you're mind is,"
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Hi there,
I’m also 60 and living with early-onset Alzheimer’s. Like you, I’ve chosen to be open about my journey, not just the medical side, but the emotional and spiritual layers too. It’s not easy, but I believe stories like ours can help shift the way people understand this disease.
I’m a longtime advocate with the Alzheimer’s Association, and I use my voice to push for change, especially around the kinds of delays and denials you described. It’s heartbreaking that even with your medical background, you had to fight so hard for answers. That shouldn’t happen to anyone.
Your decision to share your experience as a physician is incredibly powerful. You bring compassion and credibility. I know how impactful it was the first time I heard a woman speak about her early diagnosis; it helped me realize I am not alone. I know your words will help others feel less alone, too.
I’d love to stay connected and follow your journey. We’re part of a growing community of people who are living, advocating, and showing the world that Alzheimer’s doesn’t silence us; it calls us to speak louder.
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I can relate. I know my wife is having to adjust and it is hard on them as well as us.
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I am planning on sharing all the highs and lows of my life and treatment. I am hopeful all our input will be long and powerful. I have reconnected with a friend who has fought colon cancer twice and we have started a YouTube page called Friends With Medical Benefits where we will be sharing our journeys together. We had been out of touch for over 20 years after growing up close friends. We just launched a week ago with an introduction video and a couple shorts. Our goal is to educate as well as share our day to day lives through social media. Feel free to check it out.
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Wanted to update, it is Wednesday night and still no results. My next infusion is scheduled for Friday Morning and it is infusion number 7. If the results aren't in I will most likely have to delay the infusion. I am hopeful the results will be in tomorrow morning as I don't want to spend the whole day waiting for a call to reschedule my infusion.
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I’ve been searching for a diagnosis for 3.5 years. I’m curious how long it took others here from the “my memory is getting worse, I should tell my doctor “ phase to a diagnosis of Alzheimer’s. Every appointment was 6-9 months out, and I feel cheated out of the “early” phase of early onset. I’m 64.
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Thank you for sharing, Doc. Glad to have your expertise here and experiences here. I am waiting for my APOE results to see if I could/should go on antibody treatments. How long have you been on Lequembi and how has it been going?
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Thanks for joining sogdoc. I think it will be beneficial for many of us to hear from a doctor their experience as they navigate through this. We all do what we think is best for our loved ones but it's hard for them to relay to us what they are feeling both from the medications we give them and the way we treat them from day to day. Hopefully you can share your insights for a long time.
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Welcome. Looking forward to hearing about your experiences as you navigate through your illness. Blessings.
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It took 2 years for my husband’s primary care physician to agree to refer him to a neuropsychologist for testing and the testing she did confirmed that there was cognitive decline that needed further tests. Further tests have led to the diagnosis of Alzheimer’s. He was put on an antidepressant and Donepezil (sp) and is trying to cut back on alcohol that has exacerbated his memory decline. The new medications seem to have helped. Our hope is to slow progression. Persevere in your attempts to get to the bottom of your diagnosis. Good luck!
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Please take a look at the Emory University FDA montelukast Alzheimer's clinical trial onclinicaltrials.gov. 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 the trial. I emailed the FDA Office of Criminal Investigations (OCI) in early November this year and they replied that they will not be investigating it. I can understand why. During the FDA reorganization this year, many investigators were fired or reassigned. My website gives more evidence about the sabotage of this clinical trial.www.montelukast-repurposed.org
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. My mother passed away with Alzheimer's and I believe that montelukast taken multiple times a day have prevented me from going down that path. I am a retired American living in Ghana where I can buy montelukast without a prescription.
The Emory clinical trial
Another clinical trial in Canada using 30 mg montelukast twice a day showed cognitive improvement in its preliminary results but was forced into bankruptcy by its largest creditor Atai Life Sciences before the final results could be completed.
Atai is also supplying Intelgenx's version of montelukast to the Karolinska Montelukast Parkinsons clinical trial in Sweden. The Karolinska Institute is noted as the place where the Nobel prizes are awarded every year. Atai is supplying the montelukast and I am concerned that Atai may be supplying medication that does not contain the correct amount of montelukast as stated on the packaging. I emailed the principal investigator Dr Per Svenningsson but did not get any reply.
I found out about montelukast as a possible treatment for Alzheimer's in 2016 from this "The Guardian" article.
I hope that you, as a medical doctor, will investigate this treatment.0 -
Thank you for sharing your journey. I’m just starting mine, and frustrated with all the delays the insurance companies put us through.
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Leonard, I have been on Lequembi for about 5 months now. I just recently had my 9th infusion. So far, I have had no issues with the infusions. The first took about 3 hours with paperwork and initial questioning and discussions at the center. I also had to wait about 60 minutes after the infusion to see if I had any reaction. At this point from walking in the door, I am done in about 90 minutes. For anyone who doesn't know the Leqembi is done every 2 weeks for 18 months then may be continued as either continued infusions or a subcutaneous injection that can be done at home based on informed decision making between the patient and doctor. Kinsala the other infusion is monthly but follow up after initial treatment isn't as definitive yet. Something that came up before my last infusion was I had surgery the week before it and had a post op UTI. I discussed wether to have the infusion with my neurologist and as the infusion doesn't effect your immune system as long as I wasn't haven't fevers or other systemic symptoms, I was able to proceed with the infusion. I had no issue with that infusion as well. John
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I am sorry you are struggling to find answers. Even with my background it took over 1 year to a final diagnosis. My only advice is knock on every door you can. Check with friends in the local area for neurologists who are known for being good at evaluating memory issues. Some are more experienced than others. In my case I ultimately had to go to a major medical center. Don't give up on yourself and continue to fight to get answers. I know how frustrating it can be.
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Leonard, I forgot to mention APOE. I am heterozygous so I have 1 of my chromosomes with positive. My specialist at University of Pennsylvania told me I had a slightly increased chance of ARIA with treatment but he has treated multiple patients with both heterozygous and homozygous(2 chromosomes) APOE patients with only a few patients developing ARIA. There are procedures in place if ARIA develops. It is important during treatment if you notice certain symptoms that you inform your provider immediately so it can be evaluated.
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Great to hear. Just got my results and I am heterozygous as well. I am going to go for it. Thanks again.
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Good luck Leonard and keep me updated on how you are doing! You can get to know me better if you want to check out my YouTube Channel "Friends with Medical Benefits". It's a podcast and videos about me and on old friend who got back together after my diagnosis. He had colon cancer twice and we are just starting to share our journey with 2 terrible diseases. I wish you well. John
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I will take a look at it. Thanks for the information!
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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