Worried about CJD/Prions after an Eye Exam

[WhyIsItAllSoSpooky]

A few days ago I had an eye exam and they used a tonometer on me to touch my eyes. I don't know if they used the disposable tips or not, and I'll call ASAP on Monday (tomorrow) to ask to be safe, but I've spent the past day or so freaking out because apparently CJD can be transferred through the eye?

I've spent the past month-month and a half freaking out about this or that concern from gastric cancer to a brain tumor to rabies, ALS, and now this, but with this now I'm actually freaking out because I feel like I might've actually been exposed to something and I'm really, really scared.

I'm gonna talk to my doctor and therapist about it too, but I don't know what else to say other than "please help me."

I'm 21, male, just to clarify.

[Fishmanpa]

The only thing you've been exposed to is your imagination, Dr. Google and an anxious mind.

FMP

[kyllikki]

As someone who has worried about each of the things on your list (except rabies... maybe next year! :doh:) that's not how 'eye exposure' works, not even in theory.

If you haven't had major eye surgery (ie a corneal transplant or something like that,) you're good.

Have you, in your entire life, ever eaten beef? If you've eat beef, this is your more likely source of "exposure", probably by several orders of magnitude... and even then, your chances are hilariously small.
I'd invite you to challenge your HA, and re-consider calling the eye doc's office for "re-assurance", unless you're also going to call up every hamburger or steak you've ever met and ask them to prove they too were prion free.

I stopped worrying about v/sCJD (and CWD, which as an American who lives in an area with deer, is a far more likely route of environmental exposure to prions...) after three things:

1. Realizing the odds of getting it are truly miniscule -- lower than the odds for ALS, and WAY lower than the odds for a brain tumor, for example. And that's even after you assume we're doing a poor job of catching it, in terms of pathology labs, etc., at present!
2a. Realizing that even exposed people don't always get it -- and nobody is really sure why
2b. Reading that even people WITH demonstrable protein folding changes (ie prion carriers) don't always show symptoms... possibly EVER
3. Discovering I am a homozygote at the relevant protein folding codon, meaning my chances of developing CJD from an "exposure" are actually below average

Obviously the last one is personal, and arguable tied to 2a/b, but still.
Do talk to your therapist. On the list of fears to have, this one is... well, it's pretty indicative of being in a really bad spot, HA wise.

Wishing you all the best.

[WhyIsItAllSoSpooky]

As someone who has worried about each of the things on your list (except rabies... maybe next year! :doh:) that's not how 'eye exposure' works, not even in theory.

If you haven't had major eye surgery (ie a corneal transplant or something like that,) you're good.

Have you, in your entire life, ever eaten beef? If you've eat beef, this is your more likely source of "exposure", probably by several orders of magnitude... and even then, your chances are hilariously small.
I'd invite you to challenge your HA, and re-consider calling the eye doc's office for "re-assurance", unless you're also going to call up every hamburger or steak you've ever met and ask them to prove they too were prion free.

I stopped worrying about v/sCJD (and CWD, which as an American who lives in an area with deer, is a far more likely route of environmental exposure to prions...) after three things:

1. Realizing the odds of getting it are truly miniscule -- lower than the odds for ALS, and WAY lower than the odds for a brain tumor, for example. And that's even after you assume we're doing a poor job of catching it, in terms of pathology labs, etc., at present!
2a. Realizing that even exposed people don't always get it -- and nobody is really sure why
2b. Reading that even people WITH demonstrable protein folding changes (ie prion carriers) don't always show symptoms... possibly EVER
3. Discovering I am a homozygote at the relevant protein folding codon, meaning my chances of developing CJD from an "exposure" are actually below average

Obviously the last one is personal, and arguable tied to 2a/b, but still.
Do talk to your therapist. On the list of fears to have, this one is... well, it's pretty indicative of being in a really bad spot, HA wise.

Wishing you all the best.


I'm waiting on 23andme results and a Nebula Genomics test kit to arrive as well.

I'll talk to the therapist ASAP, but thank you for replying. I'm still gonna call the eye office because I'm actually kind of wigging out about it and it's just really hard to shake. I'm a relatively strong 21 year old guy but this HA stuff turns me into a big baby. I've been on the verge of tears more times in the past month than I have been in the past ~2-4 years.

How did you find out that you were a homozygote? Is there any way I can find out?

[Fishmanpa]

I'm waiting on 23andme results and a Nebula Genomics test kit to arrive as well.

I'll talk to the therapist ASAP, but thank you for replying. I'm still gonna call the eye office because I'm actually kind of wigging out about it and it's just really hard to shake. I'm a relatively strong 21 year old guy but this HA stuff turns me into a big baby. I've been on the verge of tears more times in the past month than I have been in the past ~2-4 years.

How did you find out that you were a homozygote? Is there any way I can find out?

Why would a professional medical practice not follow protocol? Seriously? Why would they put themselves at such a legal risk? Why would you order some genome test? Why feed the dragon? I think therapy is a positive step.

FMP

[WhyIsItAllSoSpooky]

Why would a professional medical practice not follow protocol? Seriously? Why would they put themselves at such a legal risk? Why would you order some genome test? Why feed the dragon? I think therapy is a positive step.

FMP
1. I don't know.
2. Again, I don't know.
3. Preventative measures.
4. Because the dragon is really, really hard to fight sometimes and it's just easier to "ride it out" by giving it reassurance until it goes away.

[Fishmanpa]

1. I don't know.
2. Again, I don't know.
3. Preventative measures.
4. Because the dragon is really, really hard to fight sometimes and it's just easier to "ride it out" by giving it reassurance until it goes away.

Well... Let us know how you make out :whistles:

FMP

[WhyIsItAllSoSpooky]

Well... Let us know how you make out :whistles:

FMP
I'll let you know what they say tomorrow.

[kyllikki]

I didn't go looking for the info that I was homozygotic at the relevant Pnp codon (and I hope I just got that abbreviation right, it's been a while and I am NOT going to go look it up :) ) I happened on it after my family had a bit of a question about genetic susceptibility to somethin ELSE. And of course you must know that even GG status doesn't 100% guarantee protection against vCJD. Just makes it much less likely / a longer latency time.

Here's the thing, Spooky. This instant you're worried about your eyes, but I think even you know that this is a pretty darn far fetched theory.

I notice you skipped right past my beef question...

How long until you move on from this to something else?

Talk to your therapist.

[WhyIsItAllSoSpooky]

they don't use the disposable tips

[kyllikki]

Huh, interesting! Presumably they disinfect it somehow. (And honestly I'd be far more worried about getting Omicron or RSV from the tonometer at present... yeesh)

So now what? Your eye has been touched by a thingee that has touched other eyes, and you've eaten some beef, and there are deer out there peeing out indestructible prions, by the gallon, into watershed areas.
What's the exit strategy here? Are you just going to worry about this forever? Again, I say all this as someone who did all this research not long ago and beat this fear.

I'll also add, for a touch of humor... can I interest you in some other infectious diseases that are WAY, like WAY WAY WAY, more likely to kill you?

[WhyIsItAllSoSpooky]

They do disinfect it, but prions are really hard to kill. They said that the chances of me getting something like a prion disease in general were infinitesimal, but the lizard brain with the hypochondria and OCD makes it really, really hard to believe that I haven't been exposed to something. I'm gonna talk to my therapist and maybe my PCP about it. I asked another person who works in eye stuff and they said the same thing, that the chances are basically zero, but I'm still really scared.

[kyllikki]

Like I said, I went through this fear so... I get it. But really, truly, the chances here are asymptotically-approaching-zero small.
This is gonna be my last post to you because I am trying to throw you a bunch of ropes here but I don't think they're helping.

Your risk has always been not-absolute-zero, and it will continue to be not-absolute-zero. It would have even been not-zero if they'd used disposable tips on the machine.
The sooner you can live with this, the sooner you'll feel better.

Your therapist absolutely needs to know you're in this hole, because clearly your rational brain and your emotional brain are experiencing two different perceived realities right now, and that is positively not sustainable.
Best of luck.

[olivia0703]

With covid, they are taking more precautions than ever. The Goldmann tonometer would be thoroughly sterilised after every patient

[WhyIsItAllSoSpooky]

I'm going to talk with my therapist later today, but as of now I'm having a very hard time trying to tell myself that all of the anxiety symptoms and somatic symptoms are actually anxiety. I'm worried that if I wasn't exposed to something on the 22nd, that what I'm feeling is somehow vCJD and that I might've ate something in the past or been exposed another way.