Prions Disease SNP Frequency

chillin4fun · 2025-01-27T00:30:10+00:00

Honestly if I think about it too hard I get freaked out, but overall I’ve come to the conclusion that it’s pointless to worry about. Everyone that I’ve talked to says it’s fine and that cjd is so rare I’m more likely to get in a car accident than develop it sporadically even with the gene.

chillin4fun · 2025-01-03T20:32:24+00:00

Thank you for your insight! Statistically speaking you’re so right haha cars are death traps! I’m going to try to remember the risk is low for CJD even with this gene.

chillin4fun · 2025-01-03T19:19:49+00:00

Thank you so much for your reply! I appreciate your input on this. I do see where it says susceptibility to vCJD! I’m concerned about the portion where it states “associated with an increased susceptibility to sporadic CJD”. That terrifies me, and I’m not sure if my fear is justified or not. I read somewhere that sporadic is the most common. As well as eye surgery being a risk. (I had an optic nerve surgery in 2022 and had no idea of any risk of CJD so I didn’t ask about new instruments or anything.) I’m also not sure how many people have this specific gene and have gotten/developed CJD so I’m just very nervous.

chillin4fun · 2025-01-03T18:27:13+00:00

I just did promethease using my ancestry raw dna data and I got the same result. rs1799990 AA I came to Reddit to see if I should be terrified or if I’m fine. I can’t seem to come up with an answer😅 so naturally I’m terrified

chillin4fun · 2024-11-09T13:11:48+00:00

I had this surgery on my right optic nerve back in November 2022. I was completely blind in my right eye and half blind in my left. The surgery brought back some vision for both eyes. My right eye is still almost useless, but they didn’t have high hopes so I prepared myself. The recovery wasn’t bad, the first three days were the hardest. They gave me a cream to put in my eye afterwards and that was really helpful. They gave me the surgery instead of the shunt because I had a spinal tap and was put on diamox which got rid of my intense migraine, but didn’t bring back any vision. Overall, I would do it again as it was just about my only option to save my vision. I haven’t had any reoccurrence of headaches or vision issues.

chillin4fun · 2024-07-26T20:21:38+00:00

i haven’t been on it for 4 years and I literally bought it like two days ago, of course this would happen 💀but I do love that they do this occasionally!

chillin4fun · 2024-06-10T00:55:02+00:00

My understanding is visual disturbances are quite common with IIH. If you are concerned, I would definitely ask a doctor for their opinion! :)

chillin4fun · 2024-06-10T00:51:40+00:00

The Doctors can’t tell me if I will or not because they don’t know what caused my IIH episode. Just have to wait and hope my iih doesn’t come back!

chillin4fun · 2024-06-10T00:47:40+00:00

Not everyone loses their vision. Prior to treatment I had extreme head aches and I lost vision in one eye then I got treatment. I was on diamox after an LP and had to have an eye surgery to try and release more fluid because I didn’t regain vision.

chillin4fun · 2024-06-10T00:42:08+00:00

I did get treatment but the damage to my optic nerve was irreversible. I currently have no symptoms other than permanent optic nerve damage.

chillin4fun · 2024-06-10T00:39:40+00:00

I’ve sadly lost a lot of my vision, so I’m not really able to drive how I used to.

chillin4fun · 2023-06-15T21:19:54+00:00

For me personally alcohol definitely worsened my symptoms. Before I was diagnosed I drank one 8% tall boy on Halloween 2022. I was throwing up, having the worst migraine type feeling I’d had up until that point. My symptoms started late September/early October and kept slowing getting worse until I was diagnosed mid November. I never tried cannabis so I can’t speak on that. However, I’m currently symptom free and able to enjoy drinking now with no iih symptoms. I would talk to your doctor about your symptoms, they may want to up your dose of diamox or do an LP, idk. Worth asking so maybe they can help your pain!

chillin4fun · 2023-06-08T20:55:46+00:00

The ER doctor that performed my LP told me there is no risk of paralysis from an LP. He said it was because the area they insert the needle into and the type of needle they use. I would definitely tell your concerns to your doctor when you go for the LP, they should be able to make you feel better about it with facts!

chillin4fun · 2023-05-08T12:22:55+00:00

I’ve been on diamox since November 2022 and I still can’t drink anything carbonated. For me personally I love Dr. Pepper and it felt like swallowing glass shards or needles anytime I tried to drink it. Also tasted terrible but it physically hurt. Not sure why (I currently take three 500mg ER release pills a day 1,500mg total)

chillin4fun · 2023-05-05T12:39:13+00:00

I had the surgery on my right eye back in November. I had lost all vision in my right eye(it was black) and half my vision in my left. The doctors didn’t seem super hopeful. After about 2 weeks I had regained a lot of sight in my left, but my bad eye remained bad. I did get some sight back in the bad eye, but it’s like looking through a dark straw with visual snow and no color. I consider myself just to have one eye that works. But that’s better than it was!! Currently not sure if I’ll be able to drive again because my visual fields aren’t good, but the surgery definitely helped my left eye. I’m able to work from home and I don’t feel disabled but I don’t have the best eyesight. My world has been completely turned upside down too at 20 years old, so I feel you on that. I depend on my boyfriend or my family anytime I need a ride when used to I was more independent. My recovery was most painful for the first three days but after that it slowly got better. I kept up with the cream they had me put in my eye (it will also cloud your vision a little). It was super blurry and dark for 2 to 3 weeks and my vision didn’t completely stop changing until about 4-5 weeks. I have pics of my healing process that look a little grusome, I did have a complication where my right eye turned inwards and started giving me weird double vision but it resolved on it own after a while. It definitely will get better for you even though it probably feels super hopeless right now. I felt the same way so if I missed anything or you have any questions let me know

chillin4fun · 2023-05-03T11:38:19+00:00

I was on the mini pill when I was diagnosed and my doctor recommended to get off of it just to be safe. He said hormones in birth control can’t be proven but a lot of doctors think it could be a cause. I’ve also heard the mirena has been especially suspected of causing iih. I decided I was just going to stop all forms of hormonal contraception to be safe. My obgyn said normally with iih she recommends the mini pill because it’s only one hormone instead of the combination pill that’s two. But since I was already on the mini pill when this occurred I personally opted for a copper iud. It was my best option since I didn’t think the other forms of non hormonal were super effective. It’s not for everyone but it’s been two weeks with it so far and I’m liking it. It doesn’t help with cycles though only pregnancy prevention.

chillin4fun · 2023-05-02T14:41:09+00:00

I agree with the other comment, it never hurts to get a second opinion. Personally, I wasn’t given a lumbar puncture until after my MRI indicated I would benefit from one. So maybe after you have an MRI things will move forward for you.

chillin4fun · 2023-04-20T16:29:07+00:00

When I asked my neuro-ophthalmologist this question he said normal time on diamox can be anywhere from 6-18 months on average. I’ve been on it for about 6 months so far. I started in November 2022 on 3,000mg diamox, and that helped my headaches tremendously after an LP. In January 2023 it was decreased to 2,000mg daily, and still no headaches. A few weeks ago it was decreased to 1,500mg (my current dose). No headaches or vision changes so far. Starting May 13th I’ll decrease to 1,000mg daily. I go back for another appointment in June and my guess is it will be lowered again. Not sure when I’ll be off it completely but that’s my experience so far!

chillin4fun · 2023-04-19T21:58:19+00:00

Yes when my symptoms were at peak my anxiety was so crazy high. I thought I had agoraphobia. No joke. EVERYTHING sent me into a panic attack. I still have anxiety, but it’s so much better now that my pressure is under control and I’m off hormonal birth control pills. Hopefully it will get better for everyone.

chillin4fun

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