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Natalie
05-03-2010, 05:44 AM
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
05-03-2010, 08:21 AM
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
05-03-2010, 10:33 AM
Welcome Natalie, Have a good sleep. Can't wait to hear your story.

Lightwarrior
05-03-2010, 01:48 PM
Sleep tight, can't wait to hear your story.

jola57
05-03-2010, 03:01 PM
Same here, sleep tight and then share your story. I'm glad you found us.

Natalie
05-03-2010, 03:11 PM
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
05-03-2010, 03:18 PM
As you have read, your story is so much like all of ours. Looking forward to the rest.

Natalie
05-03-2010, 05:23 PM
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
05-03-2010, 05:27 PM
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
05-03-2010, 05:35 PM
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 . :)

sharon
05-03-2010, 06:01 PM
Are you anywhere near Brisbane?

Natalie
05-03-2010, 06:34 PM
tttttttttttttttttttttttttttttttttttttttttttttttttt ttttttt

sharon
05-03-2010, 06:38 PM
i am at Ipswich, what hospital are you based at?

Natalie
05-03-2010, 06:55 PM
WOW we are close , I go to the Gold Coast hospital , I used to live down there and after moving up the coast a bit , I didnt want to change my doctors as it is so hard to find good doctors let alone doctors that have heard of WG :)

sharon
05-03-2010, 07:25 PM
I am based at Ipswich. My main doc comes up from the Mater. he is head of respiratory and is really good, any problems he is quite happy for me to email him, i have had a few dramas with finding a good GP though, my original GP had to scale back to 2 days a fortnight, then i went to mums, and he closed his clinic in the middle of getting test results back, what a night mare that was. I now have a lady GP who works fulltime, has good contacts and will research stuff for me, she even got me into a pvt Dermatologist the next day, when i had a bizarre foot infection. I know, a miracle!

Natalie
05-03-2010, 07:53 PM
hope your foot is getting sorted out sharon , these are the things I would like to find out Doctors ...Am i under the right care .. ?? Gp's are a hard one 98 % havent a clue what WG is , but there are some out there that are willing to help and learn along the way with you . I hear that most of yous see reumatoligists .. up untill this morning I hadnt the foggest what they specialize in ( sad I know ) but after I bit of rearch i realized I was under the care of a few earlyer on . I really should listen more ..lol
My main doctor is a renal pysician , i was refered to him after they thought I had kidney involvment and have never left his care .
He controls my meds and scans ect . Should I be seeing other specialists ? what do you think
I have a bad infection ATM .

sharon
05-03-2010, 08:18 PM
My foot is sorted out now, i had to go pvt and saw a dermo @ Taringa. It was not cheap but was really worth it, if it comes back i have to go to infectious diseases, probably at the PA, but so far so good. I was under a rheumy earlier on, when that dr left the hospital, i saw a few others, but i felt they did not have a clue, so i have stayed with my respiratory dr ever since & like you he runs everything for me, meds tests etc. In the early days, i used to take a friend with me who is a pathologist, not much got past her! LOL
She was onto those interns let me tell you. In regards to the other spec, i am in the same boat as you. But if you have a good GP and have a good relationship with your renal guy, you should be ok, you will find they will send you off to other specialists when you need them. From my experience most drs are not game to muck around with me to much and err on the side of caution. WHat kind of infection is the problem at the moment?

elephant
05-03-2010, 08:48 PM
Hi Natalie, welcome! Someday I would love to go to Australia! I would definetly have your doctor get involved with a Wegeners specialist through the Vasculitis Foundation. I never knew about Wegeners specialist until, I started this forum. So glad I did, they do research on new meds and see tons of patient with Wegeners disease daily. I travel pretty far to see one, but I know I only have one life to live. Plus I have a family to take care of.
What medicines are you on now? Did you have lung involvement?

Natalie
05-03-2010, 08:55 PM
True Sharon about the doctors , I do have a good relationship with my Renal doc and has been very good to me . with the infection I have at the moment , bit of a long story but I had a Abcess lanced and removed from my breast Ouch ! ( well thats what they Think It was but im not so sure ) It has scared the hell out of me because its the worse infection I have had since having WG . this was done on the 10th of March and left me with a big hole that I have had to get packed and dressed every second . It was almost healed up but it started to go backwards and I got a staf infection in it . was put on Clindamycin for a few weeks . nurses said the infection was gone but 2 days later was back after another swab .. It just wont heal . I went back to my Renal Doc last Thursday and he dosnt like the look of it at all , He rang a infectious specailist and got him to have a look the same day which was good . I told them that The Clindamycin did help and it looked better then was put on Keflex antibiotics for a week and it got bad again .. So they have decided to give a big dose of Clindamycin (9 tablets a day ) as a Last resort before going back to hospital and go under the knife again . I dont want that at all and are hopin that It clears up and heals. They are talking about Cancer but I dont think It is . Gp think it could be a nasty Bug still waiting on lab results . testing for some other bugs ??.. very worried about it . Its a bit embarrassing to talk about as you can imagin being a very private part of the body . If I ever had a issue of showing strangers my boobs well that went out the window weeks ago :P

elephant
05-03-2010, 09:00 PM
Natalie, I surprised they didn't put on levaquin ( broad spectrum antibiotic) which is very strong. Oh buy the way...you must of missed my thread on Hemrrhoids. :)

Natalie
05-03-2010, 09:09 PM
Hi Natalie, welcome! Someday I would love to go to Australia! I would definetly have your doctor get involved with a Wegeners specialist through the Vasculitis Foundation. I never knew about Wegeners specialist until, I started this forum. So glad I did, they do research on new meds and see tons of patient with Wegeners disease daily. I travel pretty far to see one, but I know I only have one life to live. Plus I have a family to take care of.
What medicines are you on now? Did you have lung involvement? Hi elephant and ty for the welcome , you would love Australia and i would love to go the south Carolina sounds so nice . I never knew they existed neither thank you for that I will ask next time i visit which is only one and a half weeks away. I would say no to the lung involvment I did have one chest X ray come back with a spot or Nodule on it but It did clear . Im currentlly on 5mg of pred 3000mg of cellcept daily . take caltrate and also on Fosamax of ostio caused from the long use of pred . since My eye involvement , Which I really didnt think I would be hear today. I have been really stable .

elephant
05-03-2010, 09:14 PM
I am on Cellcept 2000 mg, cyclosporine ( immunospressant) and 9 mg of prednisone and other meds... Last year I had a good size nodule in my lung that they removed. They were not sure if it was Wegs or Lung cancer and did not want to wait. I knew the whole time it was Wegs, but if I was wrong then I be in trouble. The lung nodule was Wegs.
So glad you are stable.

JanW
05-03-2010, 11:11 PM
Welcome Natalie but sorry you had to find us. Thanks for sharing your story. I have the saddle nose as well -- will you be able to have yours repaired (or did you).

Sangye
05-04-2010, 12:16 AM
Natalie, have they biopsied that breast wound? Your words "It just won't heal" can be a red flag for Wegs. Wegs can cause vasculitic skin ulcers which completely defy treatment. It could also be a Wegs granuloma. Another member has Wegs in the breast-- I can't remember who it is (exhausted today and my brain is fried). I had horrific leg ulcers that looked infected but never were. We used tons of antibiotics to no avail. It would seem to get a little better with one then get worse again.

Even if they're culturing it and demonstrating infection, it could be secondary to Wegs. I never allowed the docs to do surgical debridements-- just had a bad feeling about it. They were chomping at the bit to do it and I now know it would have made it worse.

Brandt
05-04-2010, 05:35 AM
HI Natalie

I am from SA, at first approx. 8 months ago i also heard that i have this rare disease called wegeners granulomatosis and thought that i am the only one, but not long there after i found another case in SA and now about a week ago i stumbled across another one, or rather, they stumbled across me. i am really glad you we found this site because although our families went through this with us they will never really know what it was like. i even heard my specialist sy the other day that i am not only his first case but also the first case in SA that he knows of. i even have had the privilidge, if i can call it that, to although i am not a doctor diagnose somebody and being able to order them to get to a doctor as soon as possible because i know for a fact that he has WG because he had al the same synptoms as me. hope we can talk more in the future.

Natalie
05-04-2010, 08:21 AM
Welcome Natalie but sorry you had to find us. Thanks for sharing your story. I have the saddle nose as well -- will you be able to have yours repaired (or did you). Hi JanW Im glad I found you guys I do feel better :) WOW and i thought I was the only one with a silly nose :) If It wasnt for the nose we would look normal but No we have to deal with the looks from strangers .. but thats the least of our worrys hey
.. I havnt had my nose repaired YET My ent are talking about it now , but I had to cancel my last Apointment with them .. so must make another one . Im more concerned about my boob atm .

Natalie
05-04-2010, 08:32 AM
Natalie, have they biopsied that breast wound? Your words "It just won't heal" can be a red flag for Wegs. Wegs can cause vasculitic skin ulcers which completely defy treatment. It could also be a Wegs granuloma. Another member has Wegs in the breast-- I can't remember who it is (exhausted today and my brain is fried). I had horrific leg ulcers that looked infected but never were. We used tons of antibiotics to no avail. It would seem to get a little better with one then get worse again.

Even if they're culturing it and demonstrating infection, it could be secondary to Wegs. I never allowed the docs to do surgical debridements-- just had a bad feeling about it. They were chomping at the bit to do it and I now know it would have made it worse. Hi Sangye and thank you for reading my post and shedding a bit of light on my problem . No they havent Biopsyed the wound
and Yes it has compleatly defyed treatment .. tHIS IS WHAT SCARES THE HELL OUT OF ME . And why I asked about am I under the right care ??.. Elephent suggested a WG specialist threw Vasculitis foundation . , And I need you guys too :) if i didnt find this site then well I could be heading to far down the wrong track ..

Natalie
05-04-2010, 08:41 AM
HI Natalie

I am from SA, at first approx. 8 months ago i also heard that i have this rare disease called wegeners granulomatosis and thought that i am the only one, but not long there after i found another case in SA and now about a week ago i stumbled across another one, or rather, they stumbled across me. i am really glad you we found this site because although our families went through this with us they will never really know what it was like. i even heard my specialist sy the other day that i am not only his first case but also the first case in SA that he knows of. i even have had the privilidge, if i can call it that, to although i am not a doctor diagnose somebody and being able to order them to get to a doctor as soon as possible because i know for a fact that he has WG because he had al the same synptoms as me. hope we can talk more in the future.
Hi Brandt, 8 months how are you dealing with all of it ?. yes Im glad we have found this site to , and kicking myself I didnt bother to look earlyer. This is Unbeliveable that you have pretty much diognosed someone ! . Hope they get on top of it early and can get on with life . looking farward to chating down the track .
?

sharon
05-04-2010, 08:52 AM
Good morning Nat,
Have they done checks for mycobacterias, that is what i had in my foot, there are a few types, and they are particularly resistant to antibiotics and they do not show up in general tests, i had my lanced, swabbed, bloods etc you know the drill by now, nothing came back, they thought it was a carbuncle, but because of wegs sought a specialists opinion, specialist thought the same until he himself decided to do the tests again, when he opened it up, realized that it was no ordinary infection, It also helped he has looked after other weggies, he then started looking outside the proverbial square, did not start any treatment until he knew exatly what he was dealing with, they we worried about making it worse. I had to take antibiotics for about 4mths i think to get on top of it, i still have to keep an eye on it as my particular bug has a nasty habit of looking like it's heale, but underneath is still doing damgage. Hope you get to the bottom of it soon, keep me updated, if there is anything i can do to help let me know, you can contact me via prvate message if you like. Keep your chin up your not alone,

Natalie
05-04-2010, 09:13 AM
good morning Sharon, I 'm heading to Doc today for a dressing and I should have more lab results back , I think thats what they were looking for , microbacterias, testing for some other bugs that are harder to grow /find .. see my doc dosent look after other weggie's so I think im always taking the long way around .. Defentlly going to look into a spcialist that works with other patients with WG . do you know of any ??

Terri
05-04-2010, 09:15 AM
I never allowed the docs to do surgical debridements-- just had a bad feeling about it. They were chomping at the bit to do it and I now know it would have made it worse.

Well Sangye, you know my story on that. If they had known what was wrong I may have a whole leg today.
Speaking of which, I am still in constant pain and it is getting worse. My rheumy just informed me he doesn't know what to do. Any ideas what type of Dr to see? He thought maybe rehab for the circulation. I called several local places and they said they couldn't help me. I'm getting so frustrated. Also it was mentioned that I could possibly have lymphedema. I sure hope not. That will only lead to more problems.

Sangye
05-04-2010, 09:46 AM
Yes, you have the worst damage I've ever seen from a vasculitic skin lesion. Have you seen a vascular specialist? (Not a vasculitis specialist--different) I can't think of another specialist to try. I may have to see one too, for circulation issues since blood clots. But no surgery.

sharon
05-04-2010, 09:47 AM
Nat i hope all goes well today and you get some answers - unfortunately i have not come across too many - damn our country's small population!
My experience has been once a dr knows you have WG they will see you, as they do not see it very much, if at all, so most are willing to help, it gets their interest. Otherwise any of the bigger hospitals in Brisbane, I do know the PA has treated WG patients in their renal unit, so i could assume they have treated other people with our disease & I was referred to the PA dermatology dept, but got my foot treated privately as it was quicker. I will leave their name as a pvt message on your profile. Often with mycobacterial infections they will refer you to a hospitals Infectious Diseases dept. anyway. Sorry i was not more help, pls let me know how you get on today, take care and ask ?

Natalie
05-04-2010, 07:32 PM
Today I seen my GP for a dressing had a big talk . Lab results not back till the end of the week Mycobacteria cultures .. They think my wound looks slightly bigger but is much cleaner . It didnt look nice on sat when I got it dressed. So maybe the big doses of antibiotics are helping a bit .. I know I will be back in hospital soon when my Specialist gets back from a week off but the plan of action is un clear. I will ask for a biopsy thou before any more surgery . and the lab results hopefully will help determin where we go from here . not much else I can do till then .

elephant
05-04-2010, 07:54 PM
I love your avatar picture! Hang in there Natalie. Hoping you don't need surgery.