Hello. I was diagnosed with cyclical neutropenia 3 years ago with no family history of it. I am now 19 years old. I feel like this illness rules my life and that there is nothing I can do to change it. I have been taking the injections but I feel like I have been sentenced to lifetime of managing something that seemingly came out of the blue. It makes me very sad a lot of the time because I know that I will never be able to do many of the things that I have dreamed of (such as extended backpacking trips where I would not be able to refrigerate the medication.) It just gets me very down sometimes and I wonder why this had to happen. Sometimes I do not take my injections because I am so frustrated but then I just get the symptoms that come along with the low blood counts. I keep hoping for a cure (preferably holistically) but have not found one. I just feel very alone with this and I was wondering if anyone else ever felt this way. Thanks!

was just diagnosed, although everythign I read says fatigue is not a symptom...and I have severe fatigue!

i've heard that people taking the gcsf shots can get pretty fatigued from it. are you taking them? as for me, every time i take an injection i get really sick for about a day...headache, severe nausea, bone pain, etc. it didn't start until a while after i began the shots but my doctor doesn't know what it's from.

I haven't started getting the shots, I am currently on the "tracking" plan.... just seeing what my cycle is. it is really aggravating, my entire life i have been saying "there is somethign wrong with me, I am always sick" when i was a kid I almost died from a bacterial infection. This wasn't discovered until at 27, my digestive tract failed, and a few weeks later my dr decided to do a cbc. after 10 random tests by platelets and white count are all over the place....up and down!

yeah, me too. i was constantly sick and i knew something was wrong with me but everyone else thought i was a hypochondriac...turns out i wasn't. they tracked my blood counts for a while too to see where my cycle was and then they gave me the shots. but the shots are definitely worth it because they are much better than being sick all the time.