Where Do I Start and Where Do I End

Billmo

Hello all

I am 72 year old male and retired at age 66 after serving in the US Navy, working for Siemens Automated Process Control Systems as an Engineer for about 11 years,, and lastly as an Engineer for the Department of the Navy for 33 years traveling all over the world. In 1988 I got the Ebstein Barr Virus and one year later I was diagnosed with Rheumatoid Arthritis and put on Ansaids for joint pains. I was doing OK until about 2007 when I made numerous trips to the emergency room with muscle fatigue and pain. Then in 2008, my PCP and an Endocrinologist could not figure out what was wrong and referred me to a new, but older Rheumatologist. He first had me get a sleep study that concluded I had Sleep Apnea and I was put on an AutoCpAp. The Rheumatologist then had a surgeon take a biopsy of my upper thigh muscle the length and diameter of a pencil and it was sent off to pathology at an MDA hospital in New Orleans. I was diagnosed in 2008 with Polymyositis and put on Methotrexate, Prednisone, and IVIG Therapy for 6 years, and a few months later I broke out with noticeable skin rashes on my face and chest and over all my finger joints and was sent to a Dermatologist who took skin biopsies and between him and the Rheumatologist I was diagnosed with Dermatomyositis, which is very rare to have both Polymyositis and Dermatomyositis. I also have Raynaud’s phenomenal since I was a youngster that flares up in the cold and when I am under emotional stress. In 2010, my ophthalmologist diagnosed me with secondary Sjogren’s Syndrome that was affecting my eyes, ears, and mouth. In 2016, I was diagnosed with Type 2 Diabetes and am presently on Jardiance and Ozempic. That same year I was diagnosed with concentric hypertrophy of my left ventricle and something that causes my heart to race. Because of high BP and a couple TIAs I am on medication for my heart and blood thinners. The last TIA resulted in embolisms in 2 arteries going to my right eye causing retinal damage and I already had diabetic retinopathy. In 2018 and 2019, I first started noticing memory and problems with forgetting what I was talking about and even worse while giving command presentations. In 2024, the Polymyositis and Dermatomyositis went into remission but caused a lot of muscle atrophy throughout my body. I also had that TIA that damaged my eye in March of 2024. In December of 2025, I could not walk without a cane, and my MCI Symptoms got so bad the family told me tat they believed I had dementia of some type because I was forgetting a lot and asking the same questions over and over again after they just answered me several times, I tell the same stories and can only seem to talk about is how bad I feel. I would lose things and blame others of stealing my stuff and was suspicious of my wife of 46 years of having an off air with any of our male friends, but I never accused her directly. Then I saw the PCP and a Pain Neurosurgeon for Lumbar stenosis and they both concluded I said things to them that were considered suicidal thoughts and I was put on medication that helps. The PCP then took a full bloodwork on me and then referred me to a Neurologist specialist in Alzheimer’s and other dementias. He gave me clinical verbal and written cognitive tests, had Labcorp draw my blood for the Lumipulse Beta Amyloid 42 and pTau217 blood test that came back positive high of 0.32 pg/mL and a brain MRI and EEG that ruled everything out but Alzheimer’s Disease where I have every symptom in the Mild and several, but not all symptoms in moderate. He put me on Donepezal that I took at bedtime and had Cujo Nightmares the first 3 nights and for the first few months till now I stutter and progressively get Joe confused. The Rheumatologist checks my blood every 3 months and the labs that just came back last week showed my Polymyositis disease is back and all my muscles feel like they are on fire and great pain. Oh, the Polymyositis Biopsy in 2008 showed my muscles were saturated with statins around the inflamed areas and I had rhabdomyolysis so I was near death at that time. The Neurologist informed me that the Diabetes, Polymyositis, Sjogren’s, and Sleep Apnea cause inflammation and other toxic proteins that also attack brain cells and speed up the Alzheimer’s progression, so no idea when my end will come. Well this is the most I wrote, hope it all makes sense to the readers.

Billmo

oh I cannot take Statins ever or live vaccines Also because I am on blood thinners for being a heart and stroke risk, I do not qualify for the new FFA approved drugs for the AD, probably also because I have too many symptoms.

jaycey

I'm so so sorry to read of all your pain and your struggle - to get diagnosed, to get care, and to be well.

First of all, a very strong recommendation: you are taking a very large number of medications. You need one doctor to be looking at all of the meds, and the potential interactions among them. Do you have a primary care doctor or some other doctor who is monitoring you as a whole? If not, get one! Or ask the doctor you trust most to be the overseer. In that context, you probably don't qualify for the AD drugs because they interact with drugs you're already taking. That sucks!

You might ask about Exelon patches - they help with symptoms - I can tell you that they work for me.

Other than that, I can only wish you some peace.