Kristin~23 years old~theatre lover~College Graduate~Attending NYIT's Master's in Occupational Therapy program.Ask me anything Submit
So for a while now I have been experiencing anaphalaxis that has caused me to become hospitalized. I am seeing an allergist/ immunologist, but he has yet to find anything. We had previously been told I was allergic to bee stings, but the venom testing and blood came back negative. The problem is, I have had two bee stings this season, and both have caused SEVERE anaphalactic reactions. It makes no sense. The doctor has no answers for me. They tested for Mast cell and multiple other things and apparently all my blood work came back negative. The other episodes have an unknown cause. And, of course with an unknown cause I am now super anxious, because well who wouldn’t be if they didn’t know what would cause their throat to close. Of course the doctors all jump to the “are you sure its not a panic attack?” Yes, I am sure, I have had panic attacks and this is not the same. Would a panic attack cause my tongue to swell, diminished breath sounds in my lungs and itching/swelling? I don’t think so! But let me tell you, you do start to panic when you can’t F*****g breathe. We have no idea what is causing these reactions, but I am beyond fed up. These past 2.5-3 years have been nothing but one medical crisis after another. On top of all this I have been having chest pain randomly. They have checked my pacemaker and it checks out fine. Their answer is always chostochondritis, which makes no sense when the pain is not increased by pressing the sternum, and radiates up the neck and down the side. The best guess currently is that the pacemaker is putting pressure on a network of nerves in my upper chest. Apparently it is not dangerous, as long as the pain is controlled…..Which it is NOT! Don’t get me wrong, I do not want to live on strong painkillers, but I need something for those times that the pain gets unbearable. At this point any time the pain comes I end up in the ER. I really would like to stop being a permanent fixture in hospitals! I am honestly so frustrated, I just want to enjoy my life! I keep asking why God hates me so much? Am I a bad person? What did I do wrong?
So frustrated! Does anyone know of doctors around LI that treat Ehler’s Danlos syndrome, and/or that can diagnose mast cell activation problems? Any help would be great. It is so hard having a health condition that majority of doctors have no clue what it is…..