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Thread: how many of us have saddle nose ?

  1. #141
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    Quote Originally Posted by Bek Stone View Post
    I've posted a discussion that tells most of my story but the saddle nose came on gradually for me getting worse and I to have had problems with sinus infection and inner ear infections and UTIs but they found my WG pretty fast but I didn't respond to most of the treatment so its taking awhile to get into remission but mine is only in my sinuses I guess I'm lucky mine isn't anywhere else.
    Yes, I read your introductory story... you may be lucky to only have WG in your sinuses, but you sure have been through a lot of medical issues in your life. I'm so sorry Wegs had to hit you too, at such a young age. I'm glad you feel the Mabthera is working and you may be in remission soon. Things could really look up for you then. I hope so.

    Strange how we are all different, your saddle nose happened gradually and mine showed up all of a sudden, with no pain or warning. I guess maybe it was happening earlier but I just didn't notice it. The doc in the hospital, two days before I discovered it, didn't say anything. Sometimes I think doctors just aren't very observant.
    Anne, dx'ed April 2011

  2. #142
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    Yea I agree with you there most times when I see my dr and I tell him whats been happening he just goes 'hmmmm' nods and writes stuff down lol he is a good dr tho but when I go to the PA hospital in brisbane because their board has to approve the mabthera I feel like its a big waste of time you wait all day just to see a registrar who doesn't know anything about WG and makes you feel like a guinea pig lol. My saddle nose does hurt its tender when you touch it but doesn't really hurt do you have the constant headache as well and they just vary in how bad they are?? And learnt to just deal with the pain? Coz I've just learnt to put up with it I know I should b sympathetic to people in pain but some people have a very low pain threshold and constantly complain when really they don't know pain like us with WG this is people who haven't got anything wrong with them I mean not those who have an illness lol do you fe like that sometimes I know I should but sometimes I feel like saying here have my head for a while and then tell me I don't know what pain is.

  3. #143
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    My saddle nose doesn't hurt to touch it at all, only once in awhile I feel a little twinge of pain in there and it makes me worry that the nose might collapse further but it never does. And I don't have headaches or any sinus pain like a lot of people do. I did have severe headaches when I was first diagnosed, but they went away with treatment. I started with CTX and it worked for me. I'm on MTX now. As for sinus pain, when my ENT told me my sinus bones had eroded away to where I no longer had sinus pockets where stuff could collect, that my remaining tissues in there were so well healed that I wouldn't have any more problems with sinus infections or pain in that area. I guess I feel pretty lucky, but also a little guilty for not having pain where others do. I was told at the dentist once that I have a high pain threshold, a tooth had broken and was hanging by a thread, and I wasn't hurting like they all thought I should be. So maybe that's part of it.
    Anne, dx'ed April 2011

  4. #144
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    I also am one of the lucky ones with the saddle nose. I wear glasses and people don't notice it as much. Children always seem to notice and come right out and say what's wrong with your nose, it's not right.... I also am one of the lucky ones that can't taste or smell. Kinda sucks but I think of it this way, Somethings I am great full not to smell.. When people find out that I have WG they say you wouldn't even know you are sick. You are always so happy and fun never complain. My response is what can you do be miserable and have no one want to be around you. I have had a total of 13 surgerys so far and just found out I need two more... I just tell the Dr's I am the queen of surgerys. I had to go to a new Dr due to Fl state law. I have to see a pain management Dr now... He said I seem so POSSITVE and ask me if I ever seen a psychology Dr. I said no I really can't afford to see anymore Dr's I have 12 now and can't afford anymore.. The saddling of my nose, they stated they would have to take a piece of bone out of my hip to build it back up but it's a long wase away.... They have to make sure they keep all the infection down and under control. I am glad I am able to talk to people who have WG cause you are more likely to understand. Noone is as understanding like we are. C.J

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