u/incompetent_bird

Hi all! I'll start by saying that I have consulted with my doctors about this, but they did not have much information for me, so I thought I'd check here. I’m 28 years old and live in the US. I was diagnosed with NF1 when I was three months old. As expected, it's progressed with age. I have one plexiform tumor, and many a cutaneous tumor. I've had a surgery to remove around 9 tumors, and have recently been paying a lot of attention to my nascent fibromas, of which there are many. Within this year, I have completely changed the way that I eat, and I follow a strict anti-inflammatory, low protein, vegan diet, and I've noticed a lot of improvements with my overall health. Here's where I'm feeling stuck and nervous - I have recently been heavily reevaluating my medication regimens. I (like many of you) have a long history of trialing different medicines from psych meds to pain meds. Currently, my biggest question and concern is - how are these medicines interacting with my NF1? What (if anything) can I do to mitigate the impact of the influence that these have on my body/tumors? I recently got bloodwork done and my vitamin D and B12 were extremely, extremely low, despite me spending time in the sun (with protection), and eating B12 where I can. She would like me to supplement both of those with vitamins, but I am scared that it will influence my body in a negative way, since I know that this is such a complex and highly variable condition and that we metabolize things so differently. If it is of interest to anyone, my current med list is lamictal, pregabalin, propranolol, xanax, and vyvanse. I have not found much well founded research about the ways that these things may impact us, and my concern is about activation of m-TOR, IGF-1 and so on and so forth. Thanks so much for reading this, and if you have made it this far, my wish is for each of us to continue experience the advancements being made in NF research. Hope is a discipline, and when some of us can't hold it, I trust that others can.