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Hypereosinophilic syndrome (HES)

Blood Cancers & Disorders | Last Active: May 14 4:41am | Replies (59)

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@donnahes

Hi thank you Colleen. Oh it is such a long story. But i suppose worth typing it out. So around mid September i notice that the bottom lower cheek on the right side was puffy. it was swollen on the inside and puffed out on the outside. i went to the dentist thinking maybe it was dental related. he said it might be TMJ so i just let it go but within a couple days it got worse the swelling traveled to under my chin. During this time i went to my primary, an oral surgeon, the ER twice, an allergist, an autoimmune doc, a gastro doc an all during this month long process i became more and more weak with an inability to pass much urine, pain in my low right back and weakness in my arms and legs. my face and neck continued to swell and i had hives on occasson on my scalp and neck. During these times throughout the month i had labs drawn and each time my eosinophils were elevated, they began at 6 then went to 55. on the day they were 55 i ended up in the hospital. My urine tests all were abnormal with lots of protein and an indication of an infection. During my admittance in the hospital a CT scan was done, two MRIs, an endoscopy and a bone marrow aspiration along with multiple lab draws. the CT scan and MRI both showed a thickened wall of the bladder which was evaluated to be due to some sort of infection and to match to the urine tests. the doctor skipped over that and never addressed it. other than this the only thing that was abnormal was my blood with elevated eosinophils of 76% on the worst day eosinophil abosolute i believe was at 13. the bone marrow results showed no signs of cancer but did show the elevated eosinophils. Once they took the marrow they began a treatment with prednisone 40 MG and within 12 hours it decreased the 76% to 49% i was then released after 5 days in the hospital. I have been to multiple follow up appts and each time i have asked if my allergy to hair dye could cause it. they seem to ignore this. What they don't understand is that i have dyed my hair for years every two weeks and each time would get hives and welts on my scalp and neck. I also explained that for years every couple weeks or so i would get these feelings of having the flu and i never related it to my hair dye sessions but when i really think about it i would get these episodes every couple weeks and i was dying my hair ever couple weeks. when i look back at the hundreds of photos that i took during the time i was sick in september and october the photos are so clearly an allergic reaction of some sort. I just am not sure how to get this message across. The doctor have decided on this diagnosis and have advised that this will be a lifelong medicated process. I am willing to accept this diagnosis if i know for certain it is accurate. thank goodness no organs are damaged from the high eosinophils at this time.

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Replies to "Hi thank you Colleen. Oh it is such a long story. But i suppose worth typing..."

oh one more thing. about one week out of the hospital i ended up at the urgent care with a urinary tract infection which was treated with antibiotics. my eosinophils have been in line for about 3 weeks now. I continue to take prednisone but am now only on 10 mg and have labs drawn weekly to watch the levels.