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I don't come here that much anymore, but I do check on it every so often. When I checked it earlier I was so happy that so many people have replyed to the topic I strarted when I first joined DailyStrength about Fiberous Dysplacia. The last time I went to hospital was that the end of 2007 and I am due to go again sometime in June. I have mono FD as it's only in my jaw/chin bone (not sure exactly what it's called) however it has spread. I am thinking of having surgery to shave the bone down in the summer as my face is now really round, whereas before it was quite slim and slender if that's the way to put it. I'm not as upset about it as I used to be because it is not that noticeable anymore because the sides have evened up but I still don't like it. The pain is still there and is really intence sometimes resulting in sometimes having to take a couple of painkillers every night otherwise I can't sleep at all. Thank you everyone for reply and telling me about your FD or someone in your family who has it. It has helped me a lot because you can search about it on Google and get a load of science gobbly gook but I find it so much more benifical talking to people who are in the same position as me. If you have any questions at all don't be afraid to ask as they are more than welcome and extremely helpful. Keep me posted :) x
I've decided that this will be the place were I'm going to let it all out about FD
I am glad that I know what is up with me but there is still a possibiltity that it could be worse. Because I am yet to find out if it is mono or poly. I'm having my NM bone Whole Body Scan tomorrow which will take me one step closer to knowing ofr deffinate which one it is and what they can do about it. I have it (as I know of at the moment) on my bone which is like the chin/jaw bone, I don't know how to describe it but when you look at me straight on one side is nice and straight and the other sticks out.
I started to notice the pain getting more common and more intence about 5 months ago and I told my Mum about it and she said just take some painkillers which I had recentley started buying the little tubs of it. So when I started telling my Mum about it more and more she started to get worried because I had no problem with my teeth so we went to the doctors twice and they gave me some normal antibiotics incase it was an infection of the bone the first time I went so the second time when it was no better they told me to go to the dentists and the first time I went I had an x-ray and they found I had an absess under one of my teeth on the same side as the bone which is bigger. So I went back again and had the tooth removed, thinking it would make it better. So after about 2 weeks we went again because I was in even more pain than before. And I ended up going 2 more times to the dentists, then the second time I saw a dental surgeon to see if he knew what was wrong, he didn't and referred me to hospital where I went for a consultation then again for a CT Scan then I went again a couple of weeks ago for the results where they told me I had Fiberous Dyplacia and they didn't know if it was just mono or poly so I have to go for another scan then another consultation then who knows?!
However the pain from my jaw has stopped hurting as much but the left side of my chin at the end has started hurting quite a lot recently so if it is the FD then I dunno what will happen.
I'm 14 and I am at a stage when I care a lot about what I look like and stuff like that and for this to come along it does upset me. I don't get bullied or anything about it but it still hurts me to look at the mirror and just see some lopsided freak staring back at me. My friends and family all say that they can't tell it until I point it out and tell them but I can tell, easily. They have been supportive but I have never really had anything wrong with me and for this to come along is quite a lot to deal with and they just have no idea. I try to talk to some of my friends about it and they either look like they care for like 2 minutes then find something better to talk about or turn it round to themselves to get the attention and it really anoys me.
Please someone take the time to comment back or whatever you do on this cause I'm new to this I have no idea what you do really and help me with my problem of FD, it means a lot. Thank you x
