I don't feel like anything I do now is even worth it anymore.

If anyone is interested, to try to ease my anxiety I emailed a nf doctors from my hometown (who hasn't even seen me in a few years mind you) and she has been an absolute godsend in terms of diluting some of my anxiety, dread and feelings of inevitable doom. This is the email I just revised from her, and maybe it will help some of you as well! Sorry for the length, but I just think this is beyond reassuring. I am going to send this woman flowers, I swear.

Chaoticclare,

You ask good questions; about one-third of patients with NF have no symptoms and no progression beyond café-au-lait spots. I would say from my experience that is true; I have several patients who just have spots and have never had a neurofibroma. And I have a handful of patients that have spots plus one or two neurofibromas. I think that a great deal of older patients who have nothing but spots or spots and a few little neurofibromas have never been diagnosed, mainly because they have no other signs or symptoms of any condition. NF is one of the most common genetic conditions; there are loads of people who have it and don't know they have anything. 95% of patients with NF have spots and some neurofibromas and the little tumors never cause any significant problems, other than itching or being annoying. "Progressive" is an interesting word choice for NF - I like "variable" better. NF is certainly not always progressive, at least not like some other conditions. NF can be very stable and unchanging for many people. But NF is highly variable. Some people see an increase in neurofibromas at times of hormonal change like adolescence or pregnancy. But I have some patients who have no changes during those times as well. One of the big hurdles in dealing with NF is the uncertainty. Because NF is variable and hard to predict, it can be trying to cope with it on a daily basis. And that is one of the reasons we do those annual visits, check all the spots and look at the skin for new neurofibromas. It can be very uplifting to go in and find out that nothing has changed in a year or two or three. It seems right now that NF isn't as big a problem as worrying about NF. I always want folks to have a balance - be just concerned enough to get regular check-ups, but not so much that you can't enjoy a normal life in between. And most people - the vast majority- don't progress with NF rapidly and horribly. Almost all of my patients (and I have a full clinic every month) have no changes from year to year. We even have one doctor in the community who has NF himself and put himself on the "don't call me, I'll call you" plan. In the technological world we live in, I find it very hard to disconnect and walk away from my phone, email, iPad and computer and that makes it tough not to look at certain websites or to search for information, so I get that you are having a hard time not looking. Hopefully, once you have a very good therapist, she or he will give you some alternative exercises to do to help break you out of the cycle of searching for information about NF. I also hope a good therapist will help you to find relaxation techniques and coping skills in general for dealing with anxiety in all its forms. I don't know if you are a Harry Potter fan or not, but I love those books and movies because I think they portray some facets of life very accurately. In one of the books, the class is dealing with "boggarts" which hide in closets and under beds and jump out at you, taking the form of the thing you are most afraid of. The cure is to laugh at the boggart and say "ridiculous!". Your fear of NF right now is your boggart and the fear and anxiety you are feeling are quite real and truly causing you distress. But the cure is to find that it is just your anxiety that is taking this particular form right now and we have to find a way to banish not only this boggart, but any other form your anxiety might take. I hope that makes sense, it is rather a rambling sentence!

Keep me posted!

/r/neurofibromatosis Thread