always something!

[cjhnsn29]

Well after having a blood transfusion, I find out my WG has spread more. My WG is mostly in the face area and lungs. I know have to have another surgery due to the WG has spreaded in my jaw area. I am one of the ones that have the clapsed nose. Everytime I have a flare up it attacks my face area. Not sure how this surgery will pan out. Like I have been told this disease is one that keeps on giving. Lucky us! At least we I vent to each other.

CJ

[vdub]

This isn't any good! I think you are the first I've heard where it attacks the jaw. Are the blood vessels on the jaw muscles collapsing? Pain? Erosion? What's happening?

[Jaha]

I am so sorry that you had to have a blood transfusion and that now you have one more thing to deal with. I'm wishing you all the best with your upcoming surgery.

[cjhnsn29]

Vdub, my WG has been mostly in my face. My nose is collapsed and it had gotten my cheek bones. It also made my gums go over top of my teeth cause the blood supplied. It is making swallowen of my eyes. So I have a lot of pain in face and also lungs.

[annekat]

Vdub, my WG has been mostly in my face. My nose is collapsed and it had gotten my cheek bones. It also made my gums go over top of my teeth cause the blood supplied. It is making swallowen of my eyes. So I have a lot of pain in face and also lungs. I'm sorry you are having these extreme problems in your facial area. I also have the collapsed nose and all the bony structures of my nasal cavity are eroded away to where I no longer have sinuses. True of some others on here, too. Not a problem for me, as everything is healed and causes no pain, except that I have double vision from my eyeballs losing support of some of the bone under them. I think my cheekbones are still intact. I have hearing loss. I've heard of people having problems in their teeth, gums, palates, etc., but not so much in the jaw. Sounds like maybe there is some aggressive bone erosion going on due to lack of blood supply in the area? Or is it damage to the muscles as vdub wondered? And what is happening with your eyes? How long have you had WG? What exactly will be done in the surgery?

[cjhnsn29]

Annekat, yes my gums were not getting enough blood supply which caused the gums to flop over my teeth and now I have to loose teeth due to it. The eyes get pressure from my nose not draining it all sits in there and builds up. For example I can watch tv for a short time or computers etc.The surgery is removal of some teeth due to me breathing through my nose while they are there they have to clean out cheek bone area.

[annekat]

Annekat, yes my gums were not getting enough blood supply which caused the gums to flop over my teeth and now I have to loose teeth due to it. The eyes get pressure from my nose not draining it all sits in there and builds up. For example I can watch tv for a short time or computers etc.The surgery is removal of some teeth due to me breathing through my nose while they are there they have to clean out cheek bone area. Thanks for the explanation. I know some others on here have had problems with their teeth and gums, including loose or broken teeth. I had sore gums early on but it was cleared up with treatment. I did have to have some rotten and neglected wisdom teeth extracted, and the molars next to them, since the rot had spread and one just broke off one day. I'm not sure it was WG related, but it could have helped it along, at least. CTX helped my lungs a lot but didn't stop the erosion in the nasal cavity or damage to my ears. I guess the process had already gotten too far underway, as I already had a saddle nose at dx. When I flare, it's mainly just fatigue and some extra mucus and coughing, and gets cleared up with an increase in prednisone. Am on 15mg./wk of MTX, and Bactrim. The flares don't seem to actively attack any structures. It seems like the erosion that was going to happen already has. But reading about your jaw and teeth problems is scary. I hope you are getting the best possible care for your WG. I'm curious where you are located. I'm not getting the best care possible, but if I had the problems you do, I'd want to be sure I was. Best of luck to you with the surgery and other issues.

[Alysia]

Annekat, yes my gums were not getting enough blood supply which caused the gums to flop over my teeth and now I have to loose teeth due to it. The eyes get pressure from my nose not draining it all sits in there and builds up. For example I can watch tv for a short time or computers etc.The surgery is removal of some teeth due to me breathing through my nose while they are there they have to clean out cheek bone area.
Hi. I think that your wg is active and needs serious treatment. what meds are you on ?

[Debbie C]

Did Barbara also have wgs in your jaw or was that from some other thing. Anyway,CJ ,sorry to hear you are going thru all this. Like Anne said with all this I hope you have a good ent and a oral surgeon. When are you supposed to have this done ? Good luck and keep us posted. That all justs sounds so painful :(

[annekat]

Did Barbara also have wgs in your jaw or was that from some other thing. Anyway,CJ ,sorry to hear you are going thru all this. Like Anne said with all this I hope you have a good ent and a oral surgeon. When are you supposed to have this done ? Good luck and keep us posted. That all justs sounds so painful :( Deb, are you referring to Barbara in Spain? I know she lost parts of her face, which showed externally in ways that none of the rest of us have reported, that I know of. I think she had another condition besides Wegs, but don't know what it was or which one caused that damage, if not both. I mainly remember she wore a patch over her nose to protect people from seeing it, but don't remember about her jaw. I think in her avatar you could see the nose patch but also a hint of a smile.

[Debbie C]

Yea I remember she always wore something over her face and I THINK, she had some major infection from something else that took away part of jaw. She was a strong lady (" look straight,between the ears " )
Sorrry CJ to get off the subject,Barbara had ALOT of things going on with her so I hope I didn't get you worried,I am sure they will get you straightened up. Plus she lived in Spain and had no excess to good drs. Keep us posted.

[annekat]

Yea I remember she always wore something over her face and I THINK, she had some major infection from something else that took away part of jaw. She was a strong lady (" look straight,between the ears " )
Sorrry CJ to get off the subject,Barbara had ALOT of things going on with her so I hope I didn't get you worried,I am sure they will get you straightened up. Plus she lived in Spain and had no excess to good drs. Keep us posted. Yes, a VERY strong and inspiring lady. No, CJ, she was a unique case and I'm sure not the same as what you are dealing with. If you are interested, though, her profile can be found under Barbara N, see member list under Community above. You can see what she wrote about herself and her last posts, but I haven't figured out how to see her posts from the beginning! Maybe someone can help there. We lost her in June of last year due to kidney failure.

[annekat]

Now I see the trick is to see her latest posts via her profile and keep clicking the right arrow to go backwards in time to find her beginning posts, or anyone else's by the same method. And you can access anyone's profile and posts by clicking their username next to their avatar in any of their posts.

[debra]

Ok, so I pulled this for a reason... Guys, wegeners, used to be called mid line, destruction syndrome!!! Yes, it can even take the face! The weg dog, SUCKS!!! Big time! I know you know this, but you're face??? Because of the small and medium sized blood vessels, it goes for the midline of the face! These blood vessels, make up the eyes, nose mouth, ect. Which is why a lot have eye problems, nose, ect. Nice of me to give you another thing to ponder, over you're weekend, huh??? Just unbelievable... Crazzzzzzzzzy,disease!!! Debra, like a breath of fresh air!!! Haha...

[annekat]

Deb, you found Barbara! One of our favorite people on here. Passed away a couple of years ago. Some of us, like Alysia, are still in pretty regular contact with her husband, a wonderful person as well. You make a good point about the face, since it is the most defining feature of who we are as we appear to others. There is lots to learn about Barbara's story on here, including links to her blog... I'm sure her membership is still active and all of her posts and threads are accessible.

[debra]

Hello, there beautiful! Anne, I remember Barbara well, I remember when she joined, and being shocked and inspired by her story. She was a absolute sweetheart, and I'm sorry another great member, is no longer gracing this forum. I remember she was I think originally from California? But living in Spain. And her love for horses, as I do as well.. Anne, when starting my research on everything wegeners, I couldn't believe this article, I think on pubmed, back in 2012, I was horrified! I trust PubMed, and medscape, I think they are the best medical sites, just my opinion... Pretty horrific huh Anne? Makes sense though, since the type of blood vessels, it effects... Anne, how goes it? Deb...

[andrew]

Ok, so I pulled this for a reason... Guys, wegeners, used to be called mid line, destruction syndrome!!!

I believe you'll find that Idiopathic Midline Destructive Disease (IMDD) or Lethal Midline Granuloma Syndrome (LMG) while perhaps a close relative of Wegener's Granulomatosis is actually a completely affliction.

[debra]

Andrew, thank you! I'll take any hope I can get! I did come across wegeners destroying the face though. Man, I tell ya, trully a huge suck factor of a disease... Hope you're good Andrew, always nice to see you pop up with you're beer! So is it Sam Adams, harpoon or bale??? You never tell! Deb...

[debra]

Bass!!! Where the heck did bale come from??? Don't even know what that is! Deb...wondering what bale is!

[annekat]

Andrew, thank you! I'll take any hope I can get! I did come across wegeners destroying the face though. Man, I tell ya, trully a huge suck factor of a disease... Hope you're good Andrew, always nice to see you pop up with you're beer! So is it Sam Adams, harpoon or bale??? You never tell! Deb... Wegs does attack the face mainly from the inside out, destroying sinus bone, septums, and turbinates, and in some, ocular orbital structures, eyes, mouth, gums, jaws, teeth and palates. Usually these days it seems to get caught before the worst stuff happens, while it can still be treated and controlled.. I dread to think of the old days when
WG was still unknown and people may have suffered more facial disfigurement, prior to actually dying of the disease. I do remember Barbara mentioning a separate disease, along with Wegs, in regard to her situation, likely the one Andrew mentioned above.

[debra]

Anne, this is very scary... Anne, what are you're thoughts on doctors calling something like this another disease name, because of lack of understanding what wegeners is capable of? I always assumed Barbara had this destruction due to Wg, and wonder how often other things are just pulled from a hat so to speak? Guess it is what it is, no matter the name, right? Nevertheless extremely scary... Deb...

[annekat]

Anne, this is very scary... Anne, what are you're thoughts on doctors calling something like this another disease name, because of lack of understanding what wegeners is capable of? I always assumed Barbara had this destruction due to Wg, and wonder how often other things are just pulled from a hat so to speak? Guess it is what it is, no matter the name, right? Nevertheless extremely scary... Deb... I was simply acknowledging that Barbara had mentioned another disease that she had that caused part of her problems, which one would have to find her mentioning in her posts and blog entries. I was also responding to what Andrew said, above, about a specific disease that may have some similarities to WG. This is something he has knowledge of and I don't , so he would be the one to ask any questions about it. I think we generally acknowledge on here that people can have other diseases at the same time as they have Wegeners, that sometimes they are similar and docs don't always know the diff, and that docs have many times misdiagnosed our symptoms as other things when they were really Wegs! I don't know what to say! I think it is possible that BOTH could be true, that the action on Barbara's face could have been due to Wegs and something else at the same time. Deb C. alluded to that in a post above. I believe I've read that syphilis can erode the face, including causing a saddle nose, at least. I'm not suggesting that Barb or anyone here ever had that! But I do remember her mentioning a specific name of a disease she had besides Wegs, just don't remember what it was. I didn't have the sense of anything pulled from a hat. She definitely said she had WG and some other disease. I am home from the market because of vertigo and really don't want to spend a lot of time on the computer looking up old posts!

[Debbie C]

I wonder if that is why my nose has been getting ice cold ?? But every time I go to my ent ,he says everything is fine ??????????? I'M going up to CC early ,on March 2nd. so I will ask her.

[debra]

I did read of syphilis being able to do this... No I meant doctors not having an answer and label something before its been really investigated. For example I was told I had ibs, when all started, and my stomach was really effected, and it was a lot more than ibs, nevertheless could be called that Still, just with a more serious cause... If this makes sense... I loved reading Barbaras posts and trully admired her... In the few months I took away, man what huge loss happened here! Anne, do you know if elephant is ok? I remember how active she was here, and enjoyed her posts as well... Don't know, maybe asking publicly is wrong? If so, please let me know, as I'm certainly no expert! Deb...

[Debbie C]

I didn't read this last post before I posted, I don't believe my problems are due to syphilis..or I least I hope not !!!! I will have to google what Andrew was referring too.
Anne,sorry your vertigo is so bad again today,due you think it can be weather related with all the other crazy thing this weather has brought this year ? Hope you fell better tomorrow :hug2:

[debra]

Deb, hi... Deb mention what Alysia mentioned in the previous post, as this makes sense. The good news here, is these particular symptoms went away on their own! No treatment, and just vanished as fast as came on? I wish it took the other symptoms with it! It did not however... It sure was nice having tears back, after having none for almost two years! Not at all healthy, as that moisture is so needed! Good luck at the appointment... Debra...

[debra]

Deb, should have been more clear, as sometimes a couple post later, can make ya go astray from original topic, in my case anyway! Deb it seems wegeners can cause Sjogrens symptoms in some people, so that's what I was referring to from Alysias post... This seems very plausible in my case, the question remains though, how and why these symptoms pretty much all subsided, the wegeners symptoms however live on... Good luck! Deb...

[annekat]

Deb, should have been more clear, as sometimes a couple post later, can make ya go astray from original topic, in my case anyway! Deb it seems wegeners can cause Sjogrens symptoms in some people, so that's what I was referring to from Alysias post... This seems very plausible in my case, the question remains though, how and why these symptoms pretty much all subsided, the wegeners symptoms however live on... Good luck! Deb... Some people have Sjogrens and Wegs and RA and Lupus, multiple AI diseases! On Facebook groups, I learn more about these other forms of vasculitis and other AI diseases than on here. Though some of us here have multiple diseases, too. And yes, docs have been grasping at straws and misdiagnosing us for years! That's why so many of us had delayed diagnoses! I guess until we have really smart robots instead of human doctors, we will always have this problem! Plus they are too overbooked and don't spend enough time looking at the whole patient and the puzzle pieces that make him or her up! It's indeed a mystery how some people's symptoms come and go, Deb, especially while untreated, whether it's Wegs or some other disease.

I haven't heard about elephant for a long time either; you could try looking her up on the member list, see when her last post was, read her posts, even PM her. I hope it's that she got way better, is in remission, and just has gotten involved in other things that take up her time.

Deb C., the vertigo wasn't that bad, but I did feel crappy all day and didn't go to the market. It has lots of scenarios; this time it was pretty moderate without a lot of actual spinning, but I went ahead and did things like talking on the phone and working on the computer and chopping wood, when I really would have been better off resting all day, even sleeping, instead, because that is more the way to handle it. Instead, I feel really strung out and like I have a hangover. So I'll have some chamomile tea and try to sleep, soon! Any sleep deprivation seems to really make it worse for me, too. But won't be taking any sedatives before bed, just need to clear my head out and sleep! I don't know if it's weather related, could be, but I think there are lots of things influencing it in my case, including stress. Nothing terrible, just lots of uncertainties and little issues to work out and not procrastinate.

Any other questions I didn't answer, later.... XOXO

[Realpro325]

In the USA we call this saddle nose and most people don't even notice the change in their nose on the bridge until its quite prevalent and needs reconstruction. I have a very slight saddle nose at the moment but I am watching very closely and using all my sinus meds and home remedies daily.
Great info in this whole thread !
James

[Titus3:2]

Debra C,syphilis is an easy diagnosis.Docs don't scratch their head over it like they do GPA.With the healthcare you have received,no way it is syphilis.Don't worry about cold nose.
Just what is coming out of your nose.




















.

[annekat]

In the USA we call this saddle nose and most people don't even notice the change in their nose on the bridge until its quite prevalent and needs reconstruction. I have a very slight saddle nose at the moment but I am watching very closely and using all my sinus meds and home remedies daily.
Great info in this whole thread !
James We know what saddle nose is on here. I have one. We are talking about Barbara, who had her whole nose area eaten away by either WG or something else or a combination of the two. It was shocking enough to see that she kept her whole nose area covered up. So we are talking about something beyond a typical saddle nose. This is an old thread that has been brought up from the past, Barbara has passed away of kidney failure, and some searching of old threads and her blog could tell you more about exactly what she had. Andrew mentioned the name of a disease above, and I can't say I know that Barb had that in addition to WG, but I do know that Andrew was not referring to saddle nose in mentioning that.

[annekat]

Just want to make clear that there is NO thought in my mind that anyone here might have syphilis. I only mentioned it to point out that WG is not the only cause of saddle noses and a lot of other things. And once we know we have WG, we should always look at that first, probably, when weird symptoms crop up, but should remember that there is always the possibility of having other conditions concurrently with WG.

[debra]

Titus, very true! James, nice seeing you again... Debra...

[debra]

Hello Anne, hope you're good! Deb...