new member Ireland

[barry2010]

I was diagnosed with w.g in sept 06.My name is Barry and I am 28 .For me it started with flu like symtoms and a fever ,a week later I got an abcess on my arm.My doc thought I had a chest infection so gave me inhalers and tablets which of course didnt work I just kept getting weaker and sicker.One night the abcess burst and would not stop weeping so next day my wife sent me packing to the hospital where I had the abcess removed.My arm kept getting worse then I started to get the worst headaches and night sweats .I went back to the hospital and I was addmitted I had every test done and they still could not find what was wrong with me.So I went home again all of a sudden my hearing went in my right ear and under my right eye started to swell and the right side of my nose and lip started to tingle and numb my wife took me back to the hospital by that stage my arm had got so bad I lost half my upper left arm.After more blood tests chest xrays and ct scans they knew something was up with my immune system.Then about 2 weeks later they had a specialist look at my results thankfully he dealt with w.g before and knew it instantly.By this stage I had a mass on my brain problems with my lungs kidneys eyes ears skin and weight.Its been a long road 4 years since I was diagnosed 2 flare ups 16 months ago in remission a little over a year .

[Jack]

Welcome to the Forum Barry. Sorry to hear that you had to get so bad before diagnosis, but as I'm sure you know by now, this is far from being an uncommon story. That's an interesting set of symptoms you had! Just goes to show how this disease affects everyone in a different way. It is no great surprise that it is difficult to diagnose.

Hope you enjoy the Forum. Discussions range from life and death to the absurd! Feel free to join in at what ever level suits your mood for the day.

[Brooke]

Yes, welcome Barry. I'm glad you are finally in remission and feeling better, that is a lot to go through. What medicines did you have to take and what are you taking currently?

[Sangye]

Hi Barry, wow, you've been through it. Wegs in the CNS is rare and very difficult to treat. What did they use?

[barry2010]

Hi Brooke thanks.I started on preds and cyclo infusions was only supposed to have 6 ended up with 10.Now I am getting retuxamab every 6 months and methotrexate weekly and am finally off the preds

[barry2010]

Hi sangye they used high doses of preds and cyclo I had 10 infusions then switched to retux and methotrexate the mass on my brain just stopped growing and never got bigger am off preds for the moment fingers crossed

[barry2010]

Hi Jack thanks for the warm welcome.Looking forward to dissusions.

[JanW]

Welcome to the forum, Barry!

[marta]

Welcome Barry,

This is a great place for us to learn and laugh and lean on each other. You've been through the wringer, and I am certain that you have so much wisdom and experience to pass on to us rookies, and I'm part of the absurd that Jack mentioned earlier.
Hope that from now on it's smooth sailing for you and you can just coach instead of play on the field.

[barry2010]

Hi JanW thanks for the welcome.