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Re: Neutropenia Symptoms - Medical Symptoms Pages

kimcalli — Tue, 18 Aug 2009 21:34:22 -0000

Hi Rose! What do you mean by natural treatments? I have searched for things that might work, but have come up with limited results.

I hate the tired part. I think I hate it more than any other symptom - at least most of the other symptoms can be seen. I hate feeling tired and dragging myself around past the point just so people don't think I am lazy. It is causing lots of issues with my marriage currently. My hubby has never experienced fatigue and is in the military - he was taught that in my case fatigue is probably due to laziness. He doesn't get it. I know someone who is married to a hypochondriac and we are constantly hearing about her ailments. People like that ruin it for the people who really do have issues.

I would love to know what things have worked for you in the past.

Thanks!

Re: Neutropenia Symptoms - Medical Symptoms Pages

kimcalli — Tue, 11 Aug 2009 21:58:52 -0000

Hi my name is Kim. I am 28 years old and have been diagnosed with Chronic Severe Idiopathic Neutropenia for a year now. My count is usually between 200 and 500 and WBC is usually 2.3 - 3.4. My symptoms are mouth ulcers, ear infections, strep throat, headaches and fatigue. My husband seems to understand all of it except for the fatigue. He tells me to exercise more or eat healthier (I do eat healthy already). He just doesn't understand.

I have tried treatment, but in my case (which is very different from most), I have a horrible reaction. I have tried G-CSF (Neupogen) and GM-CSF (Leukine) and with even the lowest dose of either, it makes me feel horrible for a day. I start to feel bone pain and migraines and then I start to shake uncontrollably and start sweating. I have some trouble breathing - like an elephant sitting on my chest. And sometimes even vomit and always nausea. After an hour or two I usually can't take the pain and shaking anymore and fall asleep/pass out. Has anyone else experienced this?

I have never had any bad infections and have been tested for all kinds of things and all comes back negative. I also have joint pain on occasion and anxiety.

Any comments? All are appreaciated!

Thanks,

Kim

Re: Neutropenia Symptoms - Medical Symptoms Pages

kimcalli — Tue, 11 Aug 2009 21:34:44 -0000

Hi Adababy, my name is Kim. I am 28 years old and have been diagnosed with Chronic Severe Idiopathic Neutropenia for 1 year now. I have a 4 year old who, thank God, is so far okay. I am sorry that your daughter has been diagnosed with this. I know it is difficult to watch your child go through pain and can understand not wanting to put her through more. I have done a lot of research on neutropenia and do know that it is common for people of African decent to have a slightly lower, normal neutrophil count. I guess the real question is how low is your daughters count? Mine is below 500, which is considered severe.
I underwent a bone marrow biopsy last year when I was diagnosed. Believe me when I say that it was painful, but only while they were doing the procedure. The procedure takes a very short time (mine took 15 minutes at the most) and afterwards it was very minimal pain for the rest of the day and fine the next day. The benefits of it far outweigh the temporary pain. The neutropenia could just be the tip of the iceberg and without the biopsy, you may not know what is really wrong until something worse happens (praying that nothing worse does). I don't mean to scare you, but it can rule out things like cancer and is a very important test. I truly hope that your daughter goes into spontaneous remission (it can happen). If your doctor is suggesting a biopsy and you don't agree, try a second opinion. Perhaps you can find a hematologist with experience with patients of African decent. I have found that a lot of times docs who more closely understand my background, do a better job with knowing how to treat me.

I hope all is well with your daughter and wish you all of the best!