I think I might have NF2
21F and think I might have NF2 but I’m scared I’m just being dramatic.
I had a peripheral Schwannoma removed in 2024 from around my collarbone area when I was 19.
When pathology got back and said it was a Schwannoma my doctors didn’t tell me anything about it, they had never even seen one until I came along.
I ended up looking it up when I got home and through that learned about NF2. The symptoms set off alarm bells for me, the biggest one being juvenile cataracts.
I was diagnosed at 16 with juvenile cataracts and it was a shock to me and my family. My eyes are pretty bad in general and continue to worsen at a pretty fast rate, my left eye is a lot worse.
I chose to brush it all off but as time goes on I keep having more issues pop up. I have a small lump in my forearm (I did get an ultrasound on it but they said it was too small at the time to see anything) it has grown a good bit since then.
A month ago I found another lump in the same area where my last Schwannoma was. I’m constantly tired and suffer from migraines, dizziness, and nausea on a regular basis. I just never feel good.
As of a few weeks ago I started having these moment where it felt like my left leg was going numb. The tingling radiated up my spine and walking felt unsteady.
I haven’t been able to get into the doctor yet due to a lot, I’m planning on going as soon as possible but I’m still nervous. Mostly because I’m scared of actually getting answers because that makes it more real. Even if I don’t have NF2 there is still something wrong with me.
Any input would be appreciated :)