i fear I could die from this.

[Drewxo]

so I have had a swollen tongue for over 3 months now, So swollen I've been in hospital in and out for a long time, I'm only 15. I have had a MRI scan about 3 weeks ago and it was shown that I have also a swollen throat. I got taken in a ambulance when it all started, I got given adrenaline and rushed too hospital, I was then put on steroids, antibiotics,(penicillin) antihistamines etc so many.
I have a lot of panic attacks and it is not helping,I've seen over 13 different consultants who want too keep me on medication but have no idea what is up with me.
I've had tests for so many different diseases,bloods etc. nothing spiked! I'm now being tested for c3 ajinoadema if that's how you spell it, also low iron deficiencies, nickel and glue! The hospital have suggested many times too send me too specialist hospitals but they want to find the cure and publish it, so will not send me.
I have always had dilated pupils so I was looking  into Addison's disease. But remember I am only 15 so I'm not sure I could diagnose myself , but I will try for my mums sake! She is so upset. I was taken off my antibiotics yesterday and my throat felt so sore I couldn't swallow. So then I was put back on another set. Of a stronger dose.
my tongue is not just slightly swallen but 10x the size of a regular tongue. I've had my tongue pierced about 20weeks ago but taken it out after atleast 4 weeks because I didn't want it. But I've had no problems with that since and been checked about that incase of a foreign body in it. Please help me. Also with my throat being sore I realised all of this could be connected as maybe a infection. But no, nothing has shown, no one knows. I've seen so many people and everyone is lost and had said I am a medical mystery, people want too expose this and publish it , all I want is too be diagnosed before it gets worse. It had not went down at all within these months, school and my education had dropped as school won't take me as there liability.
It's getting to a point where I fear it could kill me. No doctors. No consultants. No one! No one knows what this is, and it's physically depressing my family, my family live in fear with this, my mum sleeps with me every night too make sure I don't roll on my back, a swollen tongue this size is enough but a swollen throat too. this is life threatening and I need all the help I can find. Not for me, but for my family. I can sleep at night. The MRI also shown there is fluid in the swollen area.
Help me please!
Email me if so
***@****
I am desperate!

[nonny419]

I read over your post a few times. I think your probably getting tested for angioedma  the c1 just means you inherited the gene. If that is what it is and from what they are treating you with is correct ,usually it will get better but if it is cause by an allergy to something you still in contact with then you may be in need of finding out the cause . It also can be caused by lupus ,I have lupus .most often lupus hits more in the 30's  Do you itch? or swell other places?stress is also a big problem . The anemia they most likely are check for id pernicious anemia. That is something I think I also have .only because I tried years ago to get rid of my panic with acupuncture and she would give me a B_12 shot and I was a new person I could think without my mind wondering I had energy but not nervous I slept better than ever in my life .I tried b-12 vitamins but didn't feel the same only with the shots Pernicious anemia means you body doesn't absorb B-12 from foods or by mouth .it isn't fatal in fact getting the b-12 made my panic get much better some people respond to taking it under the tongue (subligual) you have lots of blood vessels under the tongue so it can absorb in the blood like that I did feel better with a shot once a month . Just rest your mind so far they are check for the right things if it is angioedema you will most likely be given a epi pen incase you have trouble breathing ,if you were my child I would get some allergy testing done. Let us know how your doing.

[nonny419]

Okay honey ,first calm down. Staying relaxed can only help stress will make you worse. Try to think if you have changed anything that you would be in constant contact with ,It almost is like you are having a constant severe allergic reaction . after that look back about a year and think of and illness like flu weight gain fatigue ,things like that. Do you know what your p o2 is Oxygen level. and heart rate? I think they are check if your body is unable to not rid itself of fluid and that why your swelling .The tongue and throat are unusual places to retain fluid. Did they check your adrenal glands and cortisol levels also you thyroid. They are covering the bases antibiotic for infection epi steroids for allergy and inflammation .I have horrible panic so I understand and am petrified of meds .I had a disease of the thyroid that made my panic attacks so bad I would call 911 every morning about 4 because my heart was pounding so hard .The graves disease was making it hard to swallow.I ended up going in saying check me for this disease that's how they found it .So I know you scare .Have the done a echo on your heart to make sure our pumping fluid fine? checked a MRI of the brain ti rule out lesions on the cranial nerves .because of the eyes .tongue and throat. I know all the consults are a pain but you need them a ENT Neuro Cardio Allergist, minimal .I will try to help but If you think of any symptoms in the last year let me know even if they don't seem related . I am not a doc I am a Naturopathic Practitioner but I was I Physicians Asst and my husband is a doc .I am a good diagnostician. Please take some deep breaths sleep on your side tuck a pillow behind you and in front if your afraid of chocking .prop your body up a bit. I be here if you need me .I am going to do some research but let me know any illness you can remember. Was the piercing before this?