New to the group

[patricia]

Hi my name is Patricia, and I have wg. I was diagnosed with it 10 year ago this January. When I first came down sick I did not know what was wrong with me. I could not breathe, My fiance took me to the ER where they ran lots and lots of test. They hospitalized me right away, I was in there for 1 1/2 weeks. They told me that my throat was closing up on me and that I would have to have a trake in my throat and that my lung had formed a cavity and was filled up with fluid which also caused me to have trouble breathing. They still did not know what wrong with me. Next they told me that I would have to have surgery, that they would have to have 70% 0f my lung cut out and that i would also have a treke in my throat. And that I had to face what was going to be and that I would have to face the music and prepare my fiance and my babies that mommie's not going to be here for long. The doctors told me I would only last 6months or less that I would be a veggie. So the day of my surgery the doctor took me to the side an told me that he had wonderful news. he told me that I had thi diease called WG And it is treatable that I did not need the surgery any more. That I wasn't going to die that I had a 2 chance at life. So here I am still alive and kicking. Im on 10mils of pedisone. In febuary 4th, I had a seizer just 1 and havent had any more so far. I was told that it was from all of the meds that I have been for 10yrs. Thanks for letting me shrare my exsperiance with all of you.

[Jack]

he had wonderful news. he told me that I had thi diease called WG

Just the kind of wonderful news everyone wants to hear!

Welcome to the Forum Patricia, sounds like you had a close call there. At least one of them had their brain in gear.
Hope you are now reasonably well and don't start getting knocked about too much by the meds side effects. They can be a real problem, but better than the alternative.

[elephant]

Welcome Patricia, thank goodness you are doing well. How long have you been on Prednisone? Did they put you on cytoxan at first? Thanks for sharing.

[Sangye]

Welcome to the group, Patricia. I guess after being told you're going to die soon, the diagnosis of Wegs was probably good news.

I'm wondering about the seizure you had. What meds do they say caused that? I haven't heard of Wegs drugs related to seizures but I certainly don't know all the side effects and risks. Did they rule out Wegs in the central nervous system via brain MRI and/or CT? That can cause seizures.

[moyan]

Hi Patricia, glad you found us.

[patricia]

Hi all good morning, I have been on preisone for the whole 10yrs. When I was first diagnosed with wg yes I was put on cytoxin also. When that worked they took me off because of my kidney's. Then they put me on Methrotrexate shots. I was on that for abit untill I started throwing up diarea and i lost weight down to 78lbs. and my bood preasure was 42/10. When I got to the hospital they rushed me in and started iv. They told me if I would have waited any longer I wouldn't have made it. I have been doing rituxen of 5 years now. Im still in remission so far. My kidney's are a nother story. Only 35% working that's both together. The reason they say that could have caused my seizior was do to the pain meds that I was taking, Darvacet, Robaxin, xannax, doxipin. I would make a cocktail wth all of them. I guess my body finally said that it was eough. I am addictted to pain pills. But I have been clean since Febuary 4, 2010. It's hard cause My pain is bad but i take tylenol. The rehb doc put me on clonidine for the pain pills. It helps. I feel normal after not feeling anything for so long. Have A great day ..

[Sangye]

I'm sure glad you've gotten off all those pain meds. Good for you for having the determination to do it, Patricia.

How often do you do ritux?

[patricia]

Just twice a year. i did my first oneon the 16 of march. The next one isMarch 30th. then I am good for a year yahoo. No side affects at all

[elephant]

Patricia, glad the medicine is working for you. Glad you got off the pain killers!

[Jack]

I can fully understand getting hooked on pain killers. It would be great to escape from my own pain for a while, but I limit myself to a couple of Paracetamol in the morning to get me going. I've avoided anything stronger because I don't want to go there and I take enough of a cocktail as it is.