hi everyone

[Natalie]

Hi,
I have just stumbled across this site, have had WG for 13yrs and have never met anyone with WG . have been reading threw the posts over the last 24hrs .. I'm not alone ! Quite sureal
I 'll post my journey after I have a sleep as I have just finnished a 10hr night shift , just thought i would say a quick hi . regards Natalie

[Sangye]

Hi Natalie, I'm glad you finally found us! I felt the same way when I first found this group-- like holy cow there are other people out there with this disease?

[elephant]

Welcome Natalie, Have a good sleep. Can't wait to hear your story.

[Lightwarrior]

Sleep tight, can't wait to hear your story.

[jola57]

Same here, sleep tight and then share your story. I'm glad you found us.

[Natalie]

ok Had a good sleep I can think straight now . Well at Present I have Ear Involvment (Hearing loss ) Nose ( saddle Nose ) eye ( lost sight in left eye ) from This very unkind desease. Was Diognosed in March 2001 After a biopsy from my nose but had a hell of a ride leading up to that date . I First noticed hearing loss on the 16th of October 1998 . presented to GP with ringing in left ear neck pain and head also ear pain , was told had two ear infections , had a lot of fluid in them . multiple antibiotics and drops , just got worse and worse . Got to the point where severe headaches puss seeping out of left ear at night sick in the belly my tounge felt numb on one side and just over the whole lot . Next morning 19th Jan 99 woke to find the whole left side of my face was numb ..Bells Pausy .. ENT found a pin hole in my ear drum . drained fluid from eardrum to relive pressure off the nerve that controls that side of face . As of this point I was refered to ENT specialist .Pain muck and hearing loss continued for 2Yrs . then my nose wanted to play the same game as my ear, Nose was very sore couldnt touch it , elbows sore, lossing feeling in my left hand nose bleeds headaches 24/7. Biopsy confirmed WG on 16th March 2001. Finally maybe some releif from the pain . excuse my spelling too , never been one of my strong points . This is going to take longer that first expected . but I guess this is the first time have been able to share my story .

[jola57]

As you have read, your story is so much like all of ours. Looking forward to the rest.

[Natalie]

I spent 3 days in hospital was told of Wg and said I would be on medication for 12 - 24 months yeah right !, left hospital on Pred bactrium and dicloxacillin . Headaches couldnt blow anything out my nose all went down my neck . this was so hard to get used to I blew up like ballon lost my nose ( saddle nose ) big life change . sitting at home the first night with a mountain of pills with all different instructions , I just sooked was scared to be alone incase something happened to me ( with all the warning they give you with new meds ) .. Had a reaction to Bactrium tabs 2 months after starting on them nasty Rash .. also ended up with shingels a few weeks later , I guess my body trying to get used to all these new poisons im putting into it . I was pretty messed up at this stage headaches shakes heart pain blood nose cramps , was told the cramps were normal .. Started Cyclo 150mg on the 1st Dec 2001 for about 4 months . I used to keep a diary with all my symptoms in but I cant find it at the moment , i stopped writing in it a few years back .
The Cyclo must have helped settle everything down because my diary jumped from 2001 till 2005.
19th Nov 2005 getting headaches all the time .
21st Dec 2005 A quote straight from my diary .." Feel crap this morning like i have been bashed around the head " Watery eyes and sore nose very itchy , severe headaches . was addmitted ..blood tests ok ENT said ears and nostrails look ok ordered Ct scan , they dont know why im getting head aches , It I had a penny for every time I heard that I would be very rich girl . the story from here carrys on in Dees post about eye trouble .
The early days of this disease are very hard as alot of you guys know .

[sharon]

Hello Nat,
Glad to see you found us!! & you are in my part of the world. Excellent!
Our disease is a strange one indeed. If i had a $ for everytiime that someone told me to go on a multi vitamin, i would also be rich. I was also told initially i would be in remission when my lungs were clear, & that would take about 9 - 12 months. Over 3years later, i am still not in remission, lungs are still not clear, and i am still on drugs. I just take one day at time and keep coffee and chocolate close by.

[Natalie]

Hello Nat,
Glad to see you found us!! & you are in my part of the world. Excellent!
Our disease is a strange one indeed. If i had a $ for everytiime that someone told me to go on a multi vitamin to help with fatigue, i would be a rich girl.
Can't wait to hear the rest of your story.

hi sharon yes This Is good news that we are in the same part of the world even the same state would love to find out where you are and if we are close to one another .