I am a 21 year old, female, athletic, college student. In the past few months, my health has deteriorated. Prior to this I only got the occasional cold.
Well, it all started in July 2012 I broke out in hives on my leg while taking a shower. At this time I had been living in Connecticut for a summer internship for about 6 weeks. Long story short by mid-August 2012 I was getting hives on an almost daily basis in different spots on my body (and sometimes my whole body) I changed to more mild soaps, detergents, shampoo, stopped wearing perfume, etc...nothing helped. Every time I broke out, I would take benadryl, which also didn't help.
The second to last week of August I returned to school in Pennsylvania. I went to the doctor and she referred me to an allergist. The day after I saw the Dr. I was shopping with a friend and my eye suddenly became swollen. Since I was getting allergy testing at the end of the following week, I just put ice on it. By the next morning the swelling had gone down a significant amount. 14 hours later I ended up in the ER with swollen lips and tongue. The ER gave me benadryl and steroids and w/e they do, however the swelling just kept getting larger...and I ended up staying in the hospital for 4 days. The hospital tested me for autoimmune diseases, thyroid problems, and did a CBC. Everything came back normal.
The day after I got out, I saw the allergist who did some allergy testing. Nothing came back positive. So he took some blood and tested me for hereditary angioedema, autoimmune problems, thyroid problems, and more allergies. Everything came back normal again. He suggested that I start taking Allegra and Zyrtec also. I started taking it, but I was still getting hives. I went back to him a few weeks later and told him the allegra and zyrtec weren't working, and he said well maybe this will just go away...it didn't.
The hives continued throughout October and then in mid-November 2012 I ended up in the ER, once again, with the lips and tongue swelling stayed in the hospital for 4 days. After I got out, I saw my Dr. (who was no help other than to say that I need to stop dying all the time) and my allergist. The allergist put me on singulair, zyrtec, allegra, and tagamet. Two weeks later I ended up in the ER again with facial swelling, hives, and abdominal pain. Since I had the abdominal pain, they did a CT scan and found an ovarian cyst, gave me some pain meds, pumped me full of benadryl and steroids, prescribed me more anti-histamines, and let me go home. So at this point I was taking the following on a daily basis: Zyrtec, Singulair, Tagament, Allegra, Zantac, Prednisone, Zofran, and Vicodin.
On Monday I saw a new allergist again who concluded that my hives and swelling were not caused by an allergy or an autoimmune disease. He said that my immune system is responding to "something" and that we need to find that "something". Then he told me about a patient who had a cyst that caused him to have sinus infections, and once they took out the cyst he never had one again. So off to the OB/GYN I went to get my ovarian cyst checked out. OB/GYN said this cyst isn't causing your hives or pain or anything for that matter, it's too small.
So here I am, still in pain, still having hives, still fatigued, still haveing swelling (mostly my ears and cheeks) and still no answers. My GP said that I just need to wait till this "goes away" and the allergist doesn't want to see me for another two weeks.
Every test I have had has come back normal, my CBC is always normal, and my CA-125 test was normal as well. What should I do next? Is there a hives specialist I could go see? I know that some people have idiopathic urticaria but they don't have these other symptoms along with it, at least from what I've read. I know something just isn't right.View Thread
I have been experiencing chronic hives for the past 7 months. I've also had various angioedema episodes of my hands, ears, cheeks, lips, tongue, throat, face and abdominal pain.
Last week, I developed a purpuric rash that was VERY painful and warm to the touch on my leg along with abdominal pain, pain below my shoulder blades, low-grade fever, and joint pain. Because it started Friday evening, my doctor advised me to go to the ER but they didn't know what the rash was and sent me home on vicodin. The following Monday I went to my PCP who also wasn't sure what the rash was. The next day I saw another doctor who wasn't sure either. Finally on Wednesday, the rash was practically gone by this time, I saw a dermatologist who said it was purpuric but that we waited too long to take a biopsy that would help determine exactly what it was and what was going on.
I'm just wondering if anyone else has ever had anything like this along with their hives.
My friends allergist said that nasal cysts and polyps can cause all the symptoms you're having. You should get a sinus CT done just to see if there is anything going on up there.
She had NO sinus symptoms, just hives and angioedema episodes mixed with being sick every two seconds (strep, then a cold, then stomach virus, etc). Had a sinus CT done, and it turned out she had a cyst in my maxillary sinus. All she had to do was rinse her nose out with a special saline mixture that her doctor made just for her in his office, and she was good to go.
I would like to point out that I am not a doctor, and this very well could not be causing any of your symptoms at all, but I think it's worth looking into.View Thread
I actually ended up contacting the academic center myself, and they saw me the ext day. They increased me allegra and zyrtec dosage, and cut out all the other meds. I began to develop daily random low-grade fevers, and then ended up in the ER with another reaction (hives, abdominal pain, and throat closing) a week later.
When my allergist found out about my most recent hospital adventure, he did quite a few tests with the following results:
Chest Xray was normal
All blood work came back normal including thyroid, ANA, CBC, CRP, ESR, and some other things I can't remember
Throat Culture was positive for strep
Urine Test was positive for bacteria
Sinus CT revealed a mass in my maxillary sinus
My allergist personally called me about the CT scan results and said I needed to see the ENT ASAP (this was the Friday Dec 21st). Unfortunately, I went home for Christmas break, and will not be able to see an ENT until my return in January.
Until then this is the plan: Continue taking the Allegra, Zyrtec, and Tagamet Start taking Prednisone, Amoxicilin, and Doxepin Rest HydrateView Thread
I have contacted a few academic centers via telephone, and they all say that they need a referral in order to see me (even thought I have PPO insurance). I asked me GP for one, and she said she she wasn't going to do it. I also asked my allergist, but I have not received a response from him yet.
After some extensive googling and directory searching, I decided to begin contacting Dr.'s directly via email (no one publishes their non-office numbers on the internet, which is smart). One of the doctors I contacted actually responded. He said that he would speak to his colleague about seeing me. I am trying to be patient and see what is eventual response will be.
In the meantime, I have developed a new symptom (night sweats) in addition to the symptoms from before. Here is my entire list of symptoms:
Angioedema (on my ears daily, appears on cheeks a few times a week, thankfully nothing hospital-worthy lately)
Stomach Pain on the left side
Night Sweats (started Friday 7 Dec)
I've also cut down my meds to just Allegra and Zyrtec since they weren't working and probably doing more harm than good. The Allegra and Zyrtec still aren't helping at all but at least I can say that it's definitely not a histamine related issue when I see my next Dr. Also, the hives and angioedema have not gotten worse since Saturday...
My question is how do I get a doctor or academic center to see me? I feel like no one is taking me seriously since I'm a 22 year old college student. It's so funny that all my friends amily, and even the dr.s I've seen in the ER think I should definitely seek more opinions, but I can't seem to figure out how to do that. Any suggestions?View Thread
I have tested since that hospitalization, 3x's to be exact. I just didn't feel it was really worth adding to the story since it was already quite long. Unfortunately, I haven't had the opportunity to go several months without having an attack to get the accurate testing your allergist speaks of.