Urticaria Vasculitis

[AshevilleKate]

So I am sitting in the hotel lobby of this little Podunk casino in northern Mississippi waiting to check in and glancing up at the TV and there is a syndicated show on called "The Doctors." I don't remember ever seeing it in my home in Asheville NC as it is not mine or my husband's cup of tea, so to speak.

There is an African American woman on the show, covered in painful hives, a condition I relate to all too well. I have suffered from recurrent hives for over 15 years. (I have also been told it is mental, by family and friends.) But this woman's case is so severe, maybe it isn't the same, I mean, she has taken it to total extremes and just annihilated her skin and her health in the process. The show proceeds. They test the woman, they discover what she has, they give it a name, (it is r-a-r-e!) but it is t-r-e-a-t-a-b-l-e!!!!!

Now, after 15 years, I feel like an incredible weight has somehow lifted off my shoulders....I cried at first. I wanted to dance next and scream after that. Then I wanted to yell at my family and holler the "I told you so's".

I have been so sick and tired of being sick and tired from this disease. I am going to my g.p. this Monday armed with all the data I found on the internet after watching this show and discovering that this was 100% me.

I guess the reason I am writing this is that I want other people to not give up, no matter what they are suffering from. I have suffered from this over 15 years, as I stated. I am also a three time cancer survivor. I have a non-operable brain tumor. I am diabetic. I am a survivor!!!!!!!!! This is a great and wonderful new day!

[Suich]

1. Great news, AshevilleKate!

Hope you get some help from your GP!

Good luck!

[Warpy]

2. No matter how wretched the diagnosis

it's always a relief when we finally get one. Just because it's rare doesn't mean it doesn't exist.

I walked out of Mass. General onto the main street, faced south, and yelled "WRONG AGAIN, MA!" It only took 14 years to get a diagnosis that didn't involve blaming me and denying how bad the pain was.

I hope your GP listens and refers you to the appropriate docs, a dermatologist and/or a rheumatologist to determine how much blood to suck out of your veins and what to test it for.

And like you said, knowing what it is usually means knowing how to treat it.

[deek]

3. congratulations

It can be so frustrating when you are not well and the medical field can give you no answers.

[Dont call me Shirley]

4. WooHoo! Keep on going girl! Good job!

Doctors are not diagnosticians anymore. I diagnosed my own illness then my doctor took credit for it

[TexasBushwhacker]

5. Have you watched Fat, Sick and Nearly Dead?

It's a documentary about a guy who weighed over 300 and had chronic urticaria. He decided to reboot his system by consuming nothing but fresh vegetable and fruit juices. He did it for 60 days because of his obesity, but the urticaria went away very quickly. You can watch it on Hulu if you're interested. He got a woman to try it and she got rid of her migraines.