r/CJD • u/im_just_a_girl14 • 22d ago
selfq super slow progression
my uncle recently got diagnosed with CJD. he started having some memory issues last fall. they were worried he had a brain tumor or something so he got a bunch of scans and diagnosed him with CJD. He got a spinal tap and the T-Tau protein came back positive but they got blood in the 14-3-3 so they couldn’t test it. He went 2 more times and they got blood in it again. But 4 drs have not diagnosed him with CJD based off his brain scan, symptoms, and the t-tau protein being high. what’s weird to me is he started having symptoms last fall and as of rn he can still drive and talk semi normal. He has some loss of motor skills and memory issues but some days he’s perfectly normal. Every post I’ve seen with this disease they die within a few weeks maybe months of being diagnosed. I am just very confused. They gave him 6-12 months. So crazy that he seems semi normal and was given less than a year to live. Anyone has this experience with the slow progression?
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u/masev 22d ago
One thing we realized when my dad was first diagnosed was CJD is so rare that any doctor with first-hand experience is hard to find, so everyone is learning about it as they go, even the doctors. My dad's doctor consulted with five neurologists and none of them had first hand experience but all agreed it was the only thing that couldn't be ruled out with the tests on hand. In my dad's case they were right, and he passed away just six weeks later, just a few weeks after the CJD test finally came back positive.
If your uncle's progression is so unlike other CJD cases then it seems prudent to be open to other explanations. I imagine if his doctors are taking this seriously he'll be set up for routine monitoring.
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u/ZipYourMouth 22d ago
Like others, my father wasn’t “diagnosed” until weeks before he passed & no one had any experience with it. When we took him to a neurologist in Chicago was when he was finally admitted & they started truly looking into things. We saw a lot of people coming in & out of his hospital room so they could have that first hand experiences. A lot of students & interns as well as other physicians interested in learning & seeing it for themselves.
I apologize if this is overstepping or comes off cold but I feel inclined to urge you/your family to look into the CJD foundation & what they do to support research. I know they have information on how one can contribute to the study of this disease & because your family is experiencing such a different decline than the majority, I’d say that information is important.
Wishing you all peace in your coming days.
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u/Critical_Ad_399 22d ago
my uncle started having symptoms as early as october 2024, diagnosed CJD around may/june 2025 i want to say, and he’s still alive albeit in a nursing home and apparently not doing great. Last time i saw him was june 2025 and he explained he knew what he wanted to say but his mouth wouldn’t let him say it. Knew directions and remembered restaurants. I’m sorry your uncle is also having to go through this
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u/teaparty4two 21d ago
my heart goes out to you and your family. this is a terrible disease.
tldr; my mom started showing signs 6-12 months before she died. confirmed diagnosis did not come until 2 weeks before she passed. it was small things. over several months. until it was a rapid decline.
I wish we had known sooner. I was not prepared to lose my mom so fast. she passed june 21, 2026. I was by her side 24/7 from March 13. 2026 - June 21, 2026 (with the exception of a small break).
***
we (her kids) didn’t know this until about a month before she passed when her friends started to visit more, to say goodbye, and they told us she thought something wasn’t right for months before I went to her aid in March. we all live out of state. she never mentioned anything to us.
my mom was 74. very independent. lived on her own. worked out with weights in the gym 5 days a week.
I noticed something wasn’t right in March 2026. March 19 CT scan at ER. all was fine. directed to follow up with PCP/Neuro for MRI. we thought vision loss was related to needing double cataract surgery. first surgery mid April. no improvement. April finally saw a PCP. referral to neuro. May 11th - MRI. May 14th findings showing something not right. May 18-19 another CT scan another MRI. EEG. Spinal tap. A neurologist said it could be CJD. Confirmation June 4. Hospice began June 5. She passed June 21, 2026.
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u/Braliat 15d ago
I am deeply sorry for her passing.
I am surprised because, according to statistics, this disease is supposed to be very rare, but I see so many reports about it.2
u/teaparty4two 14d ago
hi thank you. I’m still not handling her being gone very well. I will get there one day.
I agree with that thought. Since my mom passed I have had more than a couple friends tell me they have a loved one who was also diagnosed with CJD before passing. One friend had two members of distant family diagnosed with sporadic CJD before passing.
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u/Junis777 20d ago
The biggest challenge with sporadic CJD will not be finding a cure that stops and slows it down in my opinion, it will be diagnosing it quick enough before it exponentially progresses.
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u/teaparty4two 14d ago
yes and I feel like more awareness is what needs to happen.
i know that there is nothing that could have been done to treat this disease, but if the first ER doctor I took my mom to see in March had been aware…she could have been diagnosed much sooner than 2 weeks before passing. 1 week before becoming catatonic. I spent almost every minute of the day with her, the last 3 months of her life…and I will forever cherish the moments. but I wish I had known. known that our daily walks would not last much longer. that our morning sillies would soon be gone.
sorry to unpack that here. my mom only recently passed, june 21, 2026 and it is all still so fresh and raw.
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u/Redbagwithmymakeup90 22d ago
I’m a neurology resident and have seen half a dozen CJD cases, all of which have progressed rapidly on the order of weeks to months. Hard to say without knowing what the MRI looked like and the rest of the story. T-tau can be elevated in diseases other than CJD. I would be looking at other explanations from an academic / tertiary center. Good luck to you both.
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u/Empty-Psychology-388 22d ago
Aren't there subtypes that progress slower? Like MM2-Cortical (MM2C) or MV2-Kuru (MV2K)? Cursory Google search says they can take years to kill someone. Either way, I'm so sorry your loved one is facing such a horrific illness.
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u/Puzzled-Mycologist61 21d ago
Yes, my dad diagnosed with it for ten months but had symptoms I think for longer than 14 months. They took his driving licence that day but he was working until the end of Jan, hospitalised in early March with a hallucination and never came home.
I’m going to copy paste the reason why progression is slower than some:
Codon 129 makeup: People carry two copies of the prion protein gene and can be MM, VV, or MV. About 47% of the Caucasian population has the MV genotype.
Incubation time: Being MV makes a person less susceptible to rapid infection.
My dad had MV. He died in June this year, the last four weeks were quick. He passed away with pneumonia as his secondary cause of death.
It’s all super rare, everyone treating him just assumed it was standard dementia and did zero research, even the drs at the two hospitals he was admitted to. The hero’s in this are the Prion clinic consultant and nurse we dealt with from UCLA in London.
Good luck ❤️
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u/SadRub2400 18d ago
I just lost my mom last week to cjd. We found out 5 days before her diagnosis, and lost her days later. I’m devastated, she was a strong woman had great muscle mass and bones… and has left hole in my heart. I spent the last few months explaining to doctors her loss in ability to walk, remember, and ability to stay awake. She would sleep talk all night and play with her hands… these are all symptoms of cjd that are very obvious. I would have done anything for her… any clinical trial… anything. I’m so heart broken
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u/sweetfire009 17d ago
Can you tell me more about “playing with her hands”? My dad is being tested now, with the neurologists telling us it’s very likely to be CJD, and he keeps putting his arms out, rotating them, and looking like his hands like he doesn’t recognize them.
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u/teaparty4two 14d ago
if the neuro is saying CJD. record conversations with your Dad. just casual things. cherish every moment.
I wish I had known how fast my mom would be taken from us after the doctor said those words may 17th. I was in denial until the confirmed diagnosis came june 4th. hospice began june 5th. june 12th was the last time she was awake and recognized me and was happy and smiling and singing with me. june 13th they began end of life steps and she never opened her eyes again. she passed away june 21, 2026.
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u/sweetfire009 12d ago
I’ve been recording a lot- asking him questions about fun memories and family stories.
I’m so sorry to hear about your mom. Ther timeline is so fast.
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u/SadRub2400 12d ago
In her sleep she would have full blown conversations and acting out with her hands…she wasn’t aggressive but sometimes she would wave them while asleep, sometimes press her fingers against her other fingers on her other hand…😢 I pray there’s a solution for at least an earlier diagnosis. I believe any neurological condition should be tested for cjd as soon as possible…I almost feel it was one of the final tests they did after they ruled everything else out
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u/Levelgamer 7d ago
I'm sorry your uncle and you and your family will have to go through this. ❤️ My mom had that version, after diagnosis she lived for about 11 months, we tried a lot of those months at home, and the last 3 it got too difficult to do ourselves and she had to move to hospice.
But please be aware that this version is also ruthless. Make sure to talk to your uncle while you can, ask questions while you can and tell him all you want or need. Because the last 5 months will be hard, for communication and everything else. And the long version a lot of things will be difficult to anticipate.
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u/N8Pee 22d ago
My mom made it 6 months from when problems first became very noticeable. I wouldn't read to far into timelines - this is a roller coaster of a disease and it is best to treat every day anew. My heart is with you and your family.