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Avatar universal

Swollen. No one knows.

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!
6 Responses
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Avatar universal
I was wondering how you're doing and if you found out what the problem is
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Avatar universal
Yvw. I just realized that they did give you antihistamines. That is what Benadryl is. Maybe it will turn out to be a Nickle allergy. I know not having an answer is torturous. I hope that we both get answers soon. :)
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Avatar universal
& my tests will be back in a couple of days for nickel!
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Avatar universal
^^^^^
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Avatar universal
they done the MRI in the first place too see if there was a foreign body in my tongue from the piercing, but they said it is nothing too do with it, and my mum asked if they can drain my tongue too get fluid but they said it's not possible:'( I don't know what too do, no body knows what is Benadryl? I could ask :) thankyou xx
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Avatar universal
I'm so sorry to hear that you are going through such a thing. I know what it is like not to know what is wrong, and for no one to have any answers, it is frightening. I'm going through that with all my teeth right now. If I got it right, your tongue has been swollen for 12 weeks, and 8 weeks before that you had your tongue pierced? I'd suspect that the two things might be related.
The tongue usually takes longer to heal  when it is injured, because it is moist in a dark area. Myself, I have a severe allergy to nickle and cannot wear earrings that are not gold, otherwise the holes swell up and are painful.
I don't know how your healthcare system works, where you are located, but if your tongue is really 10x normal size, I would be insisting on getting some other opinions. Have they tried you on benadryl or something like it?
Why don't they draw the fluid out of your tongue and test it?
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