Autoimmune Disorders Community
4.09k Members
Avatar universal

ACIU Diagnosis? Help!!

I'm a 25 year old female with multiple symptoms, hives being the worst.  I was 14 the first time I had hives, tey lasted for 3 weeks.  Four years later I wake up to them on my legs, later that day I ended up in the ER head to toe covered, vomiting and fever.  My blood pressure dropped to 60/40, left lung 100% infiltrated, right lung 55% (working off of 45% of one lung) was admitted to the ICU and the Drs had no clue what was going on, vitals remained unstable for 4 days.  After another 3 days of observation they sent me home on Prednisone and 5 different antihistimines, I still had hives.
The hives went on for 2 years with no explanation.  Had all allergy tests done and nothing came back positive.  I was in and out of hospitals.  One allergist looked at me and said just by looking he could tell it wasn't allergic.  I had horrible abdominal pain, he said it was likely that I had the rash covering my organs.  
Out of nowhere they went away and had no hives for another four years.
In the meantime, I was diagnosed with gastroparesis and had pyloroplasty done to correct it.
I was diagnosed with fibromyalgia and arthroalgia.  
My liver is abnormally large, touching both my sides but they say it functions normally.
I've had Kidney stones on and off since I was 11, Frequent UTI's.
Migraines on and off since 10.
Pleurisy (inflammation of  lining of lungs) since 10.
Hands and feet always cold.
Joints and bones ache, muscles burn.
Livedo reticularis.
These are most of the things I suffer from on a regular basis.

November 18, 2010 my hives came back.  I have had them every day since then.  I do get edema with some of them and also have vasculitis as a result of some.  The worst is when I get them on my feet, they feel like they're going to split open.  None of the antihistimines have worked.  They put me on a high dose of Prednisone and they broke through within 3 days.  My dermatologist did lots of blood work and everything was normal.  She sent me to a Rheumatologist in Charleston (I live in Lexington SC).  She ran some tests and the only thing to stand out was IgE level was through the roof at 75,000.  She has been no help what so ever other than running that test.  My dermatologist told me that Cyclosporine might help.  I am a vet's assistant and we use it in dogs with autoimmune disorders so I know what it is and how it works.  The rheumatologist doesn't want to put me on it and I don't want to drive 200 miles and pay her when she isn't willing to try this.  My dermatologist says she doesn't know of anyone close to me that would prescribe it for Autoimmune Chronic Idiopathic Urticaria (what I am now diagnosed with) .  I don't know what to do and no one seems to want to help me.  
Anyone have any suggestions or know of any good specialists in SC, NC, GA?
1 Responses
Avatar universal
I also have inappropriate sinus tachycardia and esophageal dysfunction, trouble swallowing and painful spasms.
Have an Answer?
Top Autoimmune Diseases Answerers
1756321 tn?1547098925
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child
This article will tell you more about strength training at home, giving you some options that require little to no equipment.
In You Can Prevent a Stroke, Dr. Joshua Yamamoto and Dr. Kristin Thomas help us understand what we can do to prevent a stroke.
Smoking substitute may not provide such a healthy swap, after all.