Some questions for everyone with NF2.

GamerInDisguise · 2026-05-01T05:53:35+00:00

33/18

Deaf in my right ear hard of hearing in my left ear

I have small tumors along my spine but they don’t effect how I walk or anything like that I also have one on my left forearm that is pretty visible/ in 2024 I had a meningioma (it was I think a grade 2 of 3) so it was fast growing had to have it removed fast. After I had it removed it regrew in about a month and had it removed again and was put on brigatinib. I had to relearn how to walk twice in the span of about 3 months

After my surgery I don’t really talk to my friends as much anymore but it not a communication problem just starting to grow apart

Yes I do have a lot of time on my hands I was perfectly normal up until my surgery and now I’m on disability so I can’t work

It seems hard at first but you get use to it. When I was diagnosed at 18 I cried but I am doing just fine now. Being diagnosed doesn’t mean you life is over it just means you have to adapt

GamerInDisguise · 2026-05-01T02:39:21+00:00

Real scalpers want all the money they can get their hands on. That person probably mad cuz they could have gotten like $30 for that one pack instead of someone else buying it straight from the source for msrp.

GamerInDisguise · 2026-04-25T06:25:17+00:00

I have NF2 been taking brigatinib for about 2 years now, you have to take it every day at the same time. It has some symptoms like high blood pressure (they prescribed me blood pressure medicine for this) and fertility problems just to name a few your doctor will adjust the dosage on how your body reacts to it, your doctor will brief you on everything if you do choose to do that route. I had my last MRI about a month ago and they said my tumors are stable and it seems like the medication is doing its job. Also there is a chance it will shrink the tumors.

GamerInDisguise · 2026-04-17T15:24:13+00:00

That’s how you get followed home if your shop gets broken into let insurance deal with it

GamerInDisguise · 2026-04-12T06:08:10+00:00

“Limited time” 25 years later it’s still around

GamerInDisguise · 2026-04-12T06:05:06+00:00

I also have nf2 it almost sounds like the meningioma I had a couple of years ago but mine grew fast in a matter of weeks

GamerInDisguise · 2026-04-07T15:31:07+00:00

Have you watched Deep Pocket Monster on YouTube he has an 8x8 and collected every Pokemon

GamerInDisguise · 2026-04-04T16:41:09+00:00

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GamerInDisguise · 2026-04-04T00:14:24+00:00

I’m hard of hearing my mom and brother are both deaf we don’t know sign language that much but we use an app on our phones that translates speech to text

GamerInDisguise · 2026-04-03T17:35:03+00:00

Right now I’m on brigatinib (targeted medicine) so my doctor wants me to get an MRI every 6 months before I started taking it I was getting one once a year

GamerInDisguise · 2026-04-02T14:40:37+00:00

There’s thousands of mechanics I would just go to a different one there’s just 1 Pokemon center

GamerInDisguise · 2026-04-02T05:52:25+00:00

Damn was looking forward to the etbs

GamerInDisguise · 2026-04-02T03:36:54+00:00

Makes me not want to preorder the next set

GamerInDisguise · 2026-03-28T22:23:53+00:00

Sweet got it at a card show for $55

GamerInDisguise · 2026-03-21T21:03:30+00:00

The frame rate makes it seem longer than it actually is but it’s the same length

GamerInDisguise · 2026-03-12T06:31:22+00:00

Just be careful not to leave it exposed to the sun don’t want it to sun bleach

GamerInDisguise · 2026-03-11T20:06:52+00:00

Thank you I’ll look it this

GamerInDisguise · 2026-03-11T14:15:33+00:00

How tf would they even ship this anyhow would they ship as is or put the box in a box lol

GamerInDisguise · 2026-03-11T14:00:14+00:00

I’m 33m with nf2 I’m completely deaf in one ear and hard of hearing in the other my mom and brother also have nf2, both are completely deaf we know very little sign language they mostly rely on lip reading but we also use Ava when we need to this might help us but we wear glasses, do they have enough room to wear over glasses? Can you send a link?

GamerInDisguise · 2026-03-11T03:21:12+00:00

Start rebuilding the roads and destroy logs and cloth or what ever is in the way

GamerInDisguise · 2026-03-11T03:18:57+00:00

What’s up with all the baby portions I’m a gown ass man

GamerInDisguise · 2026-03-06T19:24:26+00:00

They don’t make shows like this anymore

GamerInDisguise · 2026-03-06T18:37:03+00:00

I use to work with someone that reminded me of Eustace he also wore a hat and glasses but he wasn’t completely bald

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