Just Diagnosed with AD
Good Morning,
New to this group. I was just diagnosed with AD (early stage). I am 60 and I still function at a high level. Because I can function at a high level, it is very difficult to accept this. My biggest fear is that of the unknown. How long am I going to be able function at this level? When will the debilitating symptoms start? I am thinking about being treated with Leqembi or Kisunla. I am going to get blood work next week to see if all is ok to start. I want to be proactive and fight this head on. I stopped drinking and I am in the process of changing my diet and trying to do all the right things from a lifestyle standpoint. But damn this is hard.
Comments
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So, what were your symptoms? For me, it took my falling eight times to see my neurologist, and he said it wasn't the work he did on my spinal fusion but that he saw cloudiness in my brain, and I needed to see a different neurologist. That is when I knew that my genetic past had caught up with me. I am the fourth generation on my mothers side. But they were all in their 70s and 80s. I am 55, but it might have started in my forties.
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Welcome alm. If you are functioning at a high level, how were you diagnosed with AD? I was having trouble functioning, that's why I sought an evaluation.
Iris
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My daughter thought that I was having some memory issues and she was suggesting I get a neuropsych evaluation. I did so, more to just to appease her thinking nothing was wrong with me. The neuropsych evaluation showed I had mild cognitive impairment. I consulted with a neurologist and had an MRI and PET scan. MRI was normal, but PET showed signs of deterioration suggesting AD. I have some forgetfulness here and there, but I'm still able to work, drive, exercise, etc. I'm getting a second opinion from the Mayo clinic to confirm the diagnosis.
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Alm, you are diagnosed early when you may have a better chance of moderating your illness.
Iris
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Did they offer to do a lumbar puncture for the amyloid and tau ratios or genetic testing for ApoE?
My wife who’s 64 was diagnosed in January with MCI after neuro testing with a neuro psychiatrist because she was having trouble finding her words and some trouble with recognizing familiar places when driving. After that diagnosis, they offered genetic testing and lumbar puncture. She does not have the gene that’s associated with increase risk. She did have amyloid and tau ratios that have been shown to be associated with increase risk. So then the diagnosis was updated to MCI with Alzheimer’s pathology. The neurologist submitted the info to our insurance company to approve Lequembi. The insurance company required the PET scan. She had that and that also indicated probable AD. So they approved the request for Leqembi which she will start on October 4.
She’s also taking rivastigmine after having side effects with donepezil. Did they offer you either of those meds?
Since her diagnosis, we’ve been attending a support group twice a month virtually. That seems to be helping us cope. We also went to a lawyer to set up wills and power of attorneys. She’s very functional working a part time job, driving, living mostly a normal life at this point. It’s hard to imagine her progressing. I can’t imagine it happening because she’s very healthy. So far the only thing we’ve identified that might explain this is all the head injuries she’s had over the years (car accidents and sports related).0 -
My physician did not discuss a lumbar puncture, but I had the testing done for ApoE. Still waiting on the results for that. My doctor discussed leqembi and kisunla and I am leaning toward that, but I'm concerned about the potential for serious side effects. I am also looking into stem cell therapy. The Japan version of the FDA recently approved a stem cell therapy regimen to treat AD that was developed by a research organization in Korea. Today, I spoke with someone based in the US about the treatment in Japan and it is a pretty long and expensive processes. But I am moving forward with the next step with providing medical records and providing a full medical history, etc. Finally, I am in the process of getting consultations with academic centers such as Mayo Clinic and Cleveland Clinic. However, the wait times for someone in the early stages like me are in the months and not weeks.
I am also starting to get involved with support groups. This is all new to me…I received the diagnosis about a month ago.
Where are you located? I am in Palm Beach County, Florida. Best wishes and prayers to you and your wife.
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> @allit said:
> Did they offer to do a lumbar puncture for the amyloid and tau ratios or genetic testing for ApoE?
> My wife who’s 64 was diagnosed in January with MCI after neuro testing with a neuro psychiatrist because she was having trouble finding her words and some trouble with recognizing familiar places when driving. After that diagnosis, they offered genetic testing and lumbar puncture. She does not have the gene that’s associated with increase risk. She did have amyloid and tau ratios that have been shown to be associated with increase risk. So then the diagnosis was updated to MCI with Alzheimer’s pathology. The neurologist submitted the info to our insurance company to approve Lequembi. The insurance company required the PET scan. She had that and that also indicated probable AD. So they approved the request for Leqembi which she will start on October 4.
>
> She’s also taking rivastigmine after having side effects with donepezil. Did they offer you either of those meds?
>
> Since her diagnosis, we’ve been attending a support group twice a month virtually. That seems to be helping us cope. We also went to a lawyer to set up wills and power of attorneys. She’s very functional working a part time job, driving, living mostly a normal life at this point. It’s hard to imagine her progressing. I can’t imagine it happening because she’s very healthy. So far the only thing we’ve identified that might explain this is all the head injuries she’s had over the years (car accidents and sports related).
Thank you very much for sharing this. i am early onset, age 60 and scheduled to move forward with the Kilsuna / Donanemab in 2025. My understanding is that, if you survive it, it in theory will stop any further plaque growth. Curious if others have gone through this and what is their experience, Also, I'd love to be in a support group and/or other groups to share experiences. I feel like I'm on the moon at this point alone on the journey. Thank you, appreciate any feedback and recommendations. Thank you all0 -
Thank you very much for sharing this. i am early onset, age 60 and scheduled to move forward with the Kilsuna / Donanemab in 2025. My understanding is that, if you survive it, it in theory will stop any further plaque growth. Curious if others have gone through this and what is their experience, Also, I'd love to be in a support group and/or other groups to share experiences. I feel like I'm on the moon at this point alone on the journey. Thank you, appreciate any feedback and recommendations. Thank you all0
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Welcome mtnbeaver. You might contact the Helpline at 1-800-272-3900 and ask to speak with a Care Consultant regarding a support group or Memory Club in your area. How are you doing? Please post back if you have questions.
Iris
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I just turned 65. First time in this forum.
After 7 months of testing I have been diagnosed with MCI due to early Alzheimers. I too am very highly functioning, but was getting concerned about issues with recalling events of the day, until I was prompted. Also a fog would come over me and I would at times become disoriented. The disorientation is sporadic.
I actually was initially tested for Parkinson’s due to tremors and gait issues. Once ruled out, the testing for cognition began.
I had the series of AD biomarker blood work which to my surprise showed both Tau and Amyloid way out of range. I was told that could be similar to having high cholesterol but not having a hearts attack and that I needed a Pet Scan and also neuropsychological testing.
Fortunately, or so I thought, I was told the Pet Scan was negative and was relieved. My neurologist questioned the results and asked for another review. Well that came back “oops it’s actually positive!”, and it was the same radiologist who did both reviews!
I was quite shocked. I had my neuropsychologist 7 hour exam and she diagnosed me with Amnestic MCI likely due to Alzheimer’s. well short term memory and recall related issues. I was in denial.
I got a second (third?) opinion Pet scan using a different medicine, which also came back positive. So I could no longer ignore the science.I started Kisunla last week. While still in denial due to my high functioning, I have been told by too many doctors too many times I have MCI due to early Alzheimer’s so I am trusting the results and due to my early stage taking advantage of being qualified for the Kisunla treatment. I did not want to risk advancing and no longer being eligible.
Its has been a difficult road but I am hopeful Kisunla treatments will slow progression. Thus far no side effects with exception of some headaches.
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Welcome Jjk. It is a shock to learn you might have Alzheimer's Disease. I hope the Kisunla helps you. Do you have any questions? Please keep us updated.
Iris
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Thank you Iris. I am most interested in knowing if there are others whose symptoms are sporadic yet test positive for Amyloid plaque on Pet Scan. My doctors are convinced I am dealing with Amnestic MCI due to early Alzheimer’s but due to the sporadic nature of my symptoms, I am not!
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Most symptoms begin sporadically, Jjk. You might want to keep a journal. Be sure that other causes of memory loss have been ruled out.
Iris
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My wife is getting the Leqembi at Duke in NC. There’s 3 year data on it now showing some good results.
Wishing all the best for you too
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