slayover50ugc
Region: CA
Monday 23 February 2026 17:11:03 GMT
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Diamondlil :
I'm sorry that you are going through this, as I'm also having alot of these same symptoms. Just waiting to get into see neurology, I've been waiting for 6 months already. Thank you for sharing your story and I will continue to follow you....take care 😢❤️
2026-02-26 03:33:05
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equity for all🇨🇦 :
will having a definitive diagnosis change your current day to day life? I think it's good that the doctor wants to be very sure, it's important for the doctor to do all tests to ensure it's the right one. Take a breath and have some fun, perhaps take the focus off this for a few days a week and do what makes you happy.
2026-02-24 03:21:43
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Stacimichelle :
I’m so sorry this is happening. It’s incredibly frustrating. Do they do the blood biomarker testing there?
2026-02-24 02:17:44
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valerie smith :
There’s no meds that cure it so just carry on living. My husband’s grandma died from Alzheimer’s. We took care of his dad that had Alzheimer’s his last 5 yrs. Now my husband is having some cognitive issues. Can’t get in to even see a neurologist till October soooo we just keep taking one day at a time. There’s nothing else🥺
2026-02-24 00:54:30
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❣️ Sweet Caroline ❣️ :
I know your struggle and waiting for answers is the WORSE
2026-02-24 03:45:55
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Mostlyharmless 🏴 :
I think you are wonderful! Thank you for sharing your experience.💐
2026-02-23 17:51:24
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Chelle :
What were your symptoms in the beginning that made you decide to get tested?
2026-04-03 16:07:59
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Bj 🇨🇦 :
❤️❤️❤️
2026-02-23 17:26:00
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❣️ Sweet Caroline ❣️ :
@❣️Sweet Caroline ❣️: I just seen my neuro genetic neurologist today in Alberta, she is ordering an MRI and PET scan for me I’m 51 scored 20/30 twice sept and Nov and have been getting worse and more and more symptoms daily now… o also did the 🧬 testing for the ftd Als dominant gene that my dad his dad and siblings had/have…. My dad had FTD than ALS his brother ALS his dad alzheimer’s, but now knowing more they said he most likely had FT because it had to come from the dad or the mom and the mom didn’t have it but at that time the C9orf72 gene wasn’t known to be a cause of FTD als and at that time they would’ve just called it go and senile or Alzheimer’s, so I’m being tested for that because of my early onset symptoms and mild cognitive impairment … I’ve been already told not to drive by three of my doctors now one was including her today. She said the PET scan will show more than an MRI and hopefully within six months after I get my genetic test MRI and pet scan back they will be able to diagnose and put the puzzle pieces together. One thing she did say today is with my visual symptoms that she’s saying and my past symptoms and what type of symptoms they are it coincides with early onset FTD but you can’t confirm until all the tests are back she said sometimes the MRI and PET scan won’t show changes early on so then will be a process of getting retested and doing the cognitive testing every six months to see what happens and how it progresses or if it stays as it is and then later retest and see if there’s any changes on the brain if nothing shows up this time so it can be a long process to get the diagnosis due to this reason she said and it’s the same for everyone unless something shows up that they can put the pieces together earlier, but I do hear you. It’s very stressful my genetic testing for that gene was ready last week but now I got to wait till that genetic neurologist has time to fit me in before her holidays of March to hear and revealed the results and nobody else can do it, but I’m ready to rip my hair out I just want to know the answers if I do have the gene I have 95% chance to have FTD or ALS or both and it will be a terminal outcome
2026-02-24 03:39:10
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wheredidbecsgo :
This is EXACTLY how mine went too! And it’s bc they have to have (usually) 3 identifying factors (I researched this while I was waiting for mine). They need cognitive assesment scores, imagining and one of the following, spinal tap, pet scan or blood markers. So you’re ALMOST there and there’s no question you have it.ive been following you for a long time and I see it. You spot it you got it? lol I know how incredibly frustrating and scary this is, please reach out if you need a chat buddy! There’s no doubt in my mind you have it and this is exactly what my neuro said to me until I had the spinal tap!
2026-02-23 19:36:36
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6Kelly3 🇨🇦 :
Take cannabis
2026-02-23 17:56:14
1
Anne Stellie :
Excuse me if this is inconsiderate but why is it so important for you that a label be put on your symptoms? I feel that i would’t really want to know, i would take the doctor’s advice and do the best i can with what i have. Things would be different if there was a cure but…
2026-02-23 17:42:25
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Jana-welcome2dementia :
What did your full neurocognitive testing show? I read that neurologists are discouraged from labeling early onset bcz according to them a diagnosis shows no benefit. That’s literally what they’re taught. It’s madness.
2026-02-23 20:05:59
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mskristyn :
I believe a diagnosis is necessary so if there is medication to slow it down, the sooner the better.
2026-02-24 00:25:02
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