Rareshare

My son has and it came back negative. Not exactly sure what that means. My daughter has been diagnosed w/cyclic neutropenia and she is almost 5yrs - found it when she was 9 mos.. My youngest, 2 1/2 is also diagnosed w/it. His cycle isn't as predictable as my daughters. But both are very mild as they don't develop the symptoms that I read about. Have you been tested for the gene?

Posted by iabou
9 Feb 2009, 06:53 PM

wondered if anyone has been tested for the Cyclic Gene?

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Abdominal pain Created by iabou
Last updated 10 Feb 2009, 04:48 PM

Posted by iabou
10 Feb 2009, 04:48 PM

about once a month ive been getting this horrible abdominal pain, the last few years I never told anyone about it. but recently Ive read about some serious intestinal issues with cyclic neutropenia, and im a bit worried. especially with my recent shut down of my intestines a few months ago.

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Does anyone else go through this? Please, help! Created by veroamore
Last updated 9 Feb 2009, 08:42 PM

Posted by veroamore
9 Feb 2009, 08:42 PM

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.

Posted by iabou
9 Feb 2009, 06:50 PM

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!

Posted by veroamore
9 Feb 2009, 04:50 PM

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.

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After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

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Visit sanfordresearch.org/CoRDS to enroll.

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sebw

Hi im seb, recently, feel free to have a chat with me anytime

rafterkier

pgnorah

46 years old, just diagnosed with this, but without the traditional markers of true Cyclicality. Need some help to figure this out!

Lizzyblack

not sure if i have chronic lyme (treated for 15 months on rotating antibiotics), 7 months chinese meds, now immunologist thinks i could have cyclic neutropenia. nothing is conclusive yet but it...

ton76

I'm 33 years old. I was diagnosed with Cyclic Neutropenia at 9 mos. I started taking Neupogen injections daily, 13 years ago for treatments.

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