Angiodema?? (swollen tongue, lips)

[momtocole]

Hi, I'm new here. Just about 2 months ago I began developing strange allergic reactions. They have occurred on my feet, hands, back of knee, upper thigh, lip and now tongue. I have gone to the doctor before and they said it was contact dermatitis. I have not figured out what I'm allergic to yet and am still waiting for a call back from the allergy department. Last night, I woke up at about 3am with a swollen tongue. It really freaked me out. I took 2 Benadryls and thankfully it went down almost back to normal within a couple of hours. When it happened on my lip, it swelled to the size of a grape and the Benadryl took FOREVER to kick in.

Anyway, I went to the doctor this morning and she said swelling like this (tongue, lips) is called angiodema. She said if I continue to expose myself to this allergen (whatever it may be) the next stage could be anaphylaxis.

I'm really scared. I have 2 little kids and I'm terrified of something happening. I can't avoid the allergen if I don't know what it is.:(

Please help.

Thanks,
Becky

[Matt_Clark]

Well I have not had a swelling for 2 and 1/2 years, and today they returned, I woke up in severe pain in my groin, went for a shower this morning, and for the first time it attcked my manhood! I am so embarrased that I really dont know what to do. I am in quite a lot of pain, and my antihistamine so far are not doing anything. So so gutted, I thought they had gone forever.

As I type, the tingleing has returned in my hand, and I am sure one will appear very soon. So upset I could cry!

[teenalhall]

Today was the 2nd time my daughter's lower lip has swollen just on one side. After the 2nd trip to the ER FINALLY a DR told me he thought it was angioedema. He said he hasn't ever seen it in a 12 year old but it could be. She breaks out into small hives once in awhile but never linked the 2 together till now. Benedryl don't seem to touch it. Right now she is on Prednisone. Is there anything else that can help?

[idontknowwhatthisis]

watch mystery diagnosis.......The Man with Hundreds of Lumps the same thing was happening to him!

[raycharlesfreak]

You can read my post above (Aug 17, 2010).  I had been suffering all of this strangeness just as everyone here seems to be.   I wanted to let you know that the random swelling(s) that were a constant threat have at least at this point subsided.  After a lot of research and reading, I found a doctor who was able to help me.  There is another site online that is called the road back forum which consists of many who are suffering with these maladies.  There is a therapy called Antibiotic Protocol, an old school rheumatologist therapy with which a handful of doctors are having success.   I was extremely skeptical, but after going to four or five doctors in Los Angeles, including top specialists at UCLA, who were not able to help me(!), I began to dig a bit deeper and look at this more seriously.  Thankfully, I found the right doctor who evaluated me extensively and over the course of a couple of two-three hour exams, including an array of blood tests, and started me on this therapy.  In about three weeks, my symptoms began to disappear and to this date I am still symptomless.   It is a long term therapy, and trust me when I tell you, I don't care how long it takes after going through this.  I truly did not believe that I was going to ever feel normal again.  I could not make any plans to do anything for fear of having a flare up.  I'm sure many of you can relate.  

Anyway, I sincerely hope this will help some people here.  I guess I am "paying it forward" so to speak.

Good luck.

RCF

[marysway]

It has been wonderful to read all this. I was in tears tonight as my husband has had his third tongue swelling in 2 months. Started around Christmas 2011 and he thinks it is some horrible underlying cancer or something. It was so great to read all your contributions. Sounds like there really is no known cause but I'll get him to stop the daily aspirin and maybe try some of your suggestions re daily zyrtecs and new drugs.  Please keep posting. We thought we were the only nuts on the planet with this scarey Shrek tongue thing. Sounds like so far none of us has died of the scarey throat closing. That is what scares us anyway. Prayers for you all that one day we'll figure it out.  Mary

[militarymama]

Had very similar symptoms as all the ones listed.  Was fine, not allergic to anything (except fire ants), and a very active person.  About 2 years ago, I got strep throat 3 times in a 2 month period - after that I was never the same.  Everytime they perscribed me antibiotics (that I had taken previously) my symptoms got more severe - until it turned into full blown angeoedema.

I'm on the usual regimen of Allegra, Zantec and benedryl as needed. Klonopin for anxiety attacks related to the constant sever pain in my throat.  But no answers - tested for EVERYTHING.  I'm active duty military and had a great doc that was willing to test me for every disease out there and every allergen out there with NO results.

I have symptoms every day, flushing, early morning swelling (worse if I'm ill or near my period), food sensitivities out the ying yang, heat sensitities, migraines, debilitating sore throats.  I can't exercise, can only work half days and am currently being discharged from the military after 15 years because I am no longer fit for duty.

I finally went for a "second opinion" from a new allergist and he has me set up to be tested for Mast Cell Activation Disorder (or Syndrome).  I recommend you all look it up and see if you have some of the corresponding symptoms that go along with this.  I also developed Chronic Fatigue Syndrom at the same time as the angeodema and alot of the the symptoms of the Mast Cell Activiation Disorder overlap with the CFS.  I honestly believe a mast cell disorder is at the center of all my issues and now that I have been doing more research, I'm finding more linkages with mast cell disorders and CFS.

There is no cure for MCAD, but I would pay a million dollars just to KNOW what I have and be able to move on from there.  

Good luck to all of you - I feel your pain.