u/NormanJPayne

I’ve had with this company. How many times do I have to tell them that I’m not interested? Every week someone knocks on my door. Every day I get mail from them. Is this their marketing strategy? Bully me to switch? Ugh

30+ M with NF1. I was diagnosed when I was a baby and I've had a pretty long history with it, especially when it comes to my spine. I've had multiple spine surgeries over the years, some complications along the way, and I also have dural ectasia that my surgeon first pointed out probably 10+ years ago. Things have been relatively stable for a while now, other than the chronic pain.

I recently reestablished care with an NF specialist in my city and he ordered a whole-body MRI to get a better idea of my internal tumor burden and basically establish a new baseline.

Most of the report was actually pretty reassuring. No evidence of MPNST, no clear plexiform neurofibromas, no brain malignancy, etc.

But they did find something in my cervical spinal cord at C3-C4. The report describes it as a 9 mm "posterior T2 hyperintense nodularity" that doesn't enhance with contrast. The radiologist couldn't really characterize it on the whole-body MRI and said a dedicated cervical spine MRI is needed to rule out a small cord glioma vs neurofibroma.

My doctor got me scheduled for the cervical MRI tomorrow, which I'm grateful for, but my anxiety has been through the roof since reading the report. I haven't really slept in two days and of course my brain keeps jumping straight to the worst-case scenario.

I know nobody here can diagnose this from a report, but has anyone with NF1 had something similar show up on a whole-body MRI and then get a dedicated scan? Especially a small nonenhancing spinal cord lesion like this?

Edit: I’m on 150XL

So it’s been around 37 days since I started. Have not noticed much improvement. But I’ve been feeling hungry all the time.

For years I’ve been skinny (not anorexic, just really really picky eater). If I don’t find food I really enjoy, I’d be fine skipping meals. (I went years where I’d eat one meal a day).

But now, I’ve been eating more. And I feel hungry all the time… I’m not worried about gaining weight, since I’m still skinny, and none of my siblings have any weight issues, so my genes and metabolism are doing their job.

Anyone else have the same situation? I’d eat a half pound burger with large fries and soda for lunch, and 4 hours later I’m hungry again. Before I started, that lunch would last me 24 hours before I feel hungry again.

I did some search online, and read that it could be that I am now more “aware / alert”, so I tend to notice myself getting hungry. But idk….

Today was day 24. Don’t really feel any different. I haven’t asked my doctor to adjust the dose. Because i am not sure if just need to give it more time or not. Any advice?

I didnt notice any of the side effects. I don’t have issues sleeping, if anything it made it easier for me to fall asleep, but then again, maybe it’s because I have started a new job around the time I started the medication. I take it 7:30 am every morning.

For those that are taking 150 XL. When did you notice a difference?

I was at a sport bar today (June 29). Waiting for the Germany vs Paraguay game. And the guy next to me said.. “I know the perfect song” he played “ Deutschland” on the jukebox during the pre-game / national anthem part. It was perfect! People at the place were confused for obvious reasons lol. Song been stuck in my head all day.