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diagnosing systemic mastocytosis

   My husband and I live in a small town in NC.  Most folks here that have a serious or rare disease or dysfunction travel to Duke University or Wake Forest for treatment.
   My husband has been plagued with problems over the past seven years or so that appear to be systemic in nature to me.
   His history involves working for approximately 38 years in the printing industry, exposed on a daily basis to blanket wash fumes, and all the other solvents and chemicals necessary for printing. About 13 years ago he suffered an isolated attack of idiopathic anaphalaxis, which sent him to the ER. At that time, he had no other symptoms, other than occassional sneezing when eating foods with white flour.  About seven years ago, the trouble really started to escalate. In the spring, he suffered another idiopathic anaphalaxis attack, again sending him to the ER. Before we could get him to an allergist, he was back in the ER 2 days later with the onset of anaphalaxis. We found a local allergist to treat his allergies- he has my husband taking zyrtec and singulair and my husband uses flonase and carries albutarol for his diagnosed asthma.
  Since those visits to the ER 7 years ago my husband has had subsequent problems. His food allergies have become much worse. He has a very short list of foods that do not cause offense to his system, and he has suffered with a severe attack of Ulcerative Collitis and now sees a Gastroenterologist, who has him on Asacol. He also is on Asiphex for Esophogitis. At times he is extremely sensitive to any odors, and he reacts terribly to chemicals like flea drops on dogs and perfumes. We never know what substance might trigger a reaction. My husband is 57 years old, and his quality of life is quickly deteriorating. We need more help for him.  
   I see this as a systemic problem, even though his Gastroenterologist and Allergist really won't even discuss the relationship of the two diseases with me.
  I truly believe he needs MORE help. When I began reading about mast cell dysfunctions and Systemic Mastocystitis on the internet, I truly thought this mast cell dysfunction looked like him. Also Multiple Chemical Sensitivity seems to play into his problems. Can you PLEASE help us? Perhaps you know a doctor in North or South Carolina who can give a more accurate diagnosis. Thank you for any help you can give us.
4 Responses
599170 tn?1300973893
Have you contacted OSCHA?  this is a problem from the enviorment of the factoy effecting many people they should pay mediacl bills and compensation,
Avatar universal
Cherie, thanks for your input...I'm afraid we dont know how to go about proving that...any ideas?
Avatar universal
This is really strange.  They have just diagnosed my husband with Systemic Mastocytosis and he worked in a factory for years being exposed to Toxins and lot's of heavy fumes.  Did you ever find out if this was possibly the cause of the Systemic Mastocytosis?
Avatar universal
My daughter has Mastocytosis, was a hair stylist for over 20 years, all the chemicals she breathed in has caused her to be allergic to almost everything.
If you breathe it...you eat it.. it's in your body.
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