u/MrOlly35

Hello, 22M and I was went for a mri in June on my lower spine due to bad leg pain over the last couple years, before this MRI I had physio and the problem they seemed to point to was Sciatica, however I just felt something wasn’t right so I pushed for a scan. A week after my scan I found out they found tumours and I was told it was suspected neurofibromatosis and there was a letter saying I was diagnosed with NF. Due to the mri being a “lower lumbar spine” scan I assumed this tumours were just on my lower spine. However, a couple days ago I could view the notes of the findings they found on the mri and it turns out I have multiple on my neck, multiple on my spine and pelvis. I also had a call with a neurologist yesterday who told me it may not be that NF but there is a possibility. So after being told NF and just thinking it was on my lower spine, I was still quite shocked with the news and took me a few weeks to get to terms with it, however I now know they are elsewhere and have no specific diagnosis I feel a bit worried and shocked again. I can’t help but feel I’m being dramatic, maybe it’s because if people look at me they can’t tell due to the lumps being non visible?. Like I say, this could be NF it might not but it is at least something similar, I’m just wondering if the people who were diagnosed at an age they remember how did you feel about it and did people feel similar?

Hi, I’m 22M and was told in late June I seemed to have Neurofibromatosis type1, then saw a letter from the hospital saying “patient has been diagnosed with neurofibromatosis, likely type 1”. However I received a call today from a neurologist who has said it’s not confirmed and although it could be, it could be other things. For context I have many small (roughly around 2cm) tumours from my neck, down my spine and pelvis. The neurologist however made points of me having no cafe-au-lait spots, unusual freckles and other things that may come with neurofibromatosis so they think there could be other possibilities for these tumours. I was just wondering if anyone else has no visible tumours and no other signs yet have been diagnosed with NF? Or is it really uncommon to have what I have and no other signs if it is NF? Thank you.

Hello, I’m 22M and was diagnosed with NF (told likely type 1) about a month ago. I have multiple tumours on the nerves on my spine and get really bad leg pain when sitting. When I have a discussion with them I hope to get some painkillers as the normal ones plus naproxen did nothing for me. I’m just wondering if the medications u get for this sort of thing have impactful side effects, as well as if I need medication to shrink the tumours how bad are the side effects for that? I’m just worried about it affecting me daily and my studies. Thank you!