It feels nice to share:

[Birdie]

Birdie - I often wonder if the Shingles virus (or the anti-viral meds I had to take for a year afterwards) might have triggered my WGs

I'm gonna start a new thread instead of hijacking this one. I'd really like to know who knows what triggered their WG.

[csjknits]

Orpheus,
I am glad you found the forum! Your story is sadly quite similar to mine. Like you, I feel lucky that a great doctor quickly figured out what was happening and treated quickly. I also had quickly progressing lung and kidney involvement, and I am happy to report that four months out my kidney function has returned almost to normal (by the second day in the hospital, before beginning prednisone, my kidney function was at 3% and my creatinine at 7.8), and my lungs are recovered. I had already most of my hearing in one ear and the second ear, which was declining, is back to where it was before. I also share your concerns about it happening again; in fact, I just posted about this the other day in the general forum. You're not alone, and I think you'll find great comfort in reading people's success stories.

[txrepub4God]

You mentioned a couple of things that I've also experienced. I've noticed for years - maybe 15 years or more - that I would get an extremely sharp pain inside my nose that felt like someone was taking an icepick to one single nerve and repeatedly stabbing it. I will get this stabbing sharp pain out of nowhere & it'll continue for a few days, then vanish. It is always on the same nerve as well. It is so painful that my eyes water & the only thing I can do is push on the "nerve" on the outside of my nose to try & relieve the pain, although nothing really helps. I've never known why I get this.

I also began noticing about 2 years ago that I was losing my hearing. The mid-range tones that most conversation is held in was sounding very muddled to me; I was getting extremely frustrated trying to understand TV shows or others talking around me. My husband realized I was listening to the TV way too loud. I was finally diagnosed with Wegs in March after a 2-year battle of testing/doctor hell, and decided to get the hearing loss looked at. After my hearing tests, I found out I have a severe hearing loss and needed hearing aids. Luckily, our insurance covered the cost of the hearing aids & I've been wearing them a couple of weeks now. It's amazing to hear everything; it makes you realize how much you weren't hearing before. I'm 42 & it's weird to be wearing them, but I'm getting used to it.

So sorry that you've had to join our group of Weggies. I'm new to this as well & learning right along with you. Hang in there & God bless you'

[Orpheus]

Thanks for all the support, sorry I haven't responded. I am fighting an infection and had to spend a night in hospital. I am recovering now but I am still pretty weak.

As I've always said I am taking this one day at a time but I am getting really frustrated with the lack of progress. My symptoms started up in early August (runny nose, weak feeling) which means I have been feeling sick everyday for the past 5 months. It's been so long I am not sure if I remember what feeling well is like.

[Birdie]

[QUOTE=Orpheus;99740]I am fighting an infection and had to spend a night in hospital.QUOTE]

I've been there many times, always at least three days in the hospital and once it was ten days just for infections. I was only able to stop that cycle by learning to spot an infection before it got a good hold on me. Learn to be aware of the signs and get to your doctor immediately. You'll be much better off if you get infections treated before they can run amuck.

Gary

[annekat]

Thanks for all the support, sorry I haven't responded. I am fighting an infection and had to spend a night in hospital. I am recovering now but I am still pretty weak.

As I've always said I am taking this one day at a time but I am getting really frustrated with the lack of progress. My symptoms started up in early August (runny nose, weak feeling) which means I have been feeling sick everyday for the past 5 months. It's been so long I am not sure if I remember what feeling well is like.

If your symptoms started in August it has not really been that long. It takes awhile for the meds to start working, or for you to be able to feel the difference. I was dx'd in Apr. 2011 and am still not out of the woods, though I feel I may be in medicated remission. But I did feel noticeably better by about 2 months, though there was still a ways to go. Take heart, you are young, and it probably will take you less time to get this under control than it has for many of us. As for infections, I haven't had one, but hang in there and I'm sure you can beat that.

[Debbie C]

Hi Orpheus,glad you decided to stop lurking and join in on the fun here ! Wow what a time you had of it. Your right, thank God those people were working the night you went to the hosp. And that your mom made you stay ( they know best ! ) I think if I was coughing up that much blood by anxiety would have kicked in and I would have died of heart failure !! Sorry to hear that you had to go back to the hosp.Being on these drugs you need to be careful about your surroundings...other sick people coughing or sneezing.Make sure you wash your hands often,I always carry hand sanitizer with me. When I was first sick and around sick people I would always cover my face or wear a mask in the er.
I have never heard of DVT's.... I don't know what that is and why you are bedridden. But I hope you get to feeling more like your "new" self soon
It sounds like you have a couple of good drs. but I am sure you will be seeing different types so make SURE they are experienced with wg. Good luck to you and keep us posted.

[Orpheus]

Hi Orpheus,glad you decided to stop lurking and join in on the fun here ! Wow what a time you had of it. Your right, thank God those people were working the night you went to the hosp. And that your mom made you stay ( they know best ! ) I think if I was coughing up that much blood by anxiety would have kicked in and I would have died of heart failure !! Sorry to hear that you had to go back to the hosp.Being on these drugs you need to be careful about your surroundings...other sick people coughing or sneezing.Make sure you wash your hands often,I always carry hand sanitizer with me. When I was first sick and around sick people I would always cover my face or wear a mask in the er.
I have never heard of DVT's.... I don't know what that is and why you are bedridden. But I hope you get to feeling more like your "new" self soon
It sounds like you have a couple of good drs. but I am sure you will be seeing different types so make SURE they are experienced with wg. Good luck to you and keep us posted.

DVT is Deep Vein Thrombosis aka blood clot.

I do wash my hands but I think I need to be more vigilant when it comes to that.

[annekat]

DVT is Deep Vein Thrombosis aka blood clot.

I do wash my hands but I think I need to be more vigilant when it comes to that.

And like Debra says, keep hand sanitizer nearby and use it when you can't wash hands, after handling money or shaking hands with people..... it has helped keep me from catching anything for 4 and a half years since dx, while taking immunosuppressants the whole time. I've had one cold during that time and that was it.

[woz]

As mentioned above, you must have the best hand hygiene practices, similar to nurses. Try to prepare most of you meals, take away is a lottery, wash all your fruit and veg, educate friends and family to not bring over any colds or flu, (MOST IMPORTANT) before you eat or prepare food, wash you hands well, with soap and water. I know it sounds over the top, but I have only had one cold in almost 3 years.

Regards Woz....