Discussions By Condition: I cannot get a diagnosis.

Systemic Mastocytosis

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: DAOwebe
  • October 19, 2006
  • 01:14 AM

Out of control symptoms include flushing, rashes, swelling in the nose, difficulty swallowing, tightness in the chest, light headedness, headaches, stomach pains, joint and muscle pains, blurred vision. Blood pressure ranges from 107/47 to 139/90. Run low grade fevers off and on. Frequent diaria, lost 20lbs in the past month. Currently using Claritin, pepcid, Benadryl, which seem to help. Have an inhaler which doesn't seem to do anything and carry an epipen, which I haven't had to use. Anyone know a doctor who has treated anyone with this? Anyone have any ideas on how to control these symptoms?

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  • find our what you are allergic too and stay away from them. that may help because the medications that your stating are mainly allergy/asthma medications...maybe some atrovent or albuterol might even solve the tightness of your chest...having trouble breathing? try controlling it with this method... breath in through your nose like your smelling the roses and breath out through your mouth like your blowing out a candle...hopefully this can solve some problems
    Anonymous 42,789 Replies
    • October 19, 2006
    • 04:27 AM
    • 0
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  • :D I am a mother of an 8 year ol d girl. My daughter was born with Systemic Mastocytosis. We have many years experience dealing with the symtoms of the disease. We are in the care of a specialist at Sick Kids in Toronto. The first thing you need to know is that this condition can make you have an allergic to anything at any time. I was glad to read that you have an Epipen. Other things that are known to trigger an allergic reaction are Strawberries, Red Food Die, Aspirin, Iodine, General Anesthetics, Sedations, Codiene and any medication that is considered an NSAID. If you don't know what medications are considered an NSAID ask your Pharmacist. Please check and see if your inhaler has a steroid in it because that is a medication that is an NSAID. I have lots more information about dealing with this disease . I have experieced handling the symptoms with medications, there are many. We now handle the symptoms with natural way including ommiting some foods in diet and natural supplementation and our result is better than any result we saw with medicine. E-MAIL me and I can help with medications or a natural remedy. My daughter is a very happy healthy 8 year old that has been symptom free for 1 year since I started a natural approach. We have gone from monthly visits to Sick Kids and sometimes we didn't even make a whole month to now we have made 1 whole year with no visit to Sick Kids , Emergency Rooms. She has had no vommiting (which used to be 7 times a day) and no chronic diahrea for 1 year. I would be very happy to help you. I want you to know that there are many things you can do and that you can feel much better than you do now. Hope that this has helped and that I can help you some more
    Anonymous 42,789 Replies
    • February 16, 2007
    • 02:59 AM
    • 0
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  • I have been dealing with systemic mastocytosis for 12 years now, it was gone undiagnosed untel a couple months ago. so I am honestly still learning about everything. I would greatly appreciate your knowledge. the diet you are using, how do you help stop the nausea, diarea, vomiting, your home remedy.Have you found a way to help with the swelling, cramping, from eating?
    smithtm 1 Replies Flag this Response
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