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Thread: New and confused

  1. #11
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    Quote Originally Posted by Alaskatom View Post
    Or get the doctor you've seen to start you on appropriate meds while you wait for you specialist appt. I agree you need to be pushy, and that it's important. These could be crucial weeks/months for your long term health that are passing while you are politely waiting.
    I agree with this completely. Now that you have been diagnosed, you shouldn't have to wait for your specialist appt. to get treated. Any doctor can, with a little research at least, find out the appropriate meds to start you on, and with your mainly nasal involvement, it would probably be an immunosuppressant like methotrexate and, for sure, prednisone, the anti-inflammatory that we all depend on. I agree that you should get pushy and insist on treatment right away. It can always be changed by the future rheumatologist, as there are quite a few options, but you will have gotten a head start on controlling the symptoms and slowing down the progress of the disease and the damage it can cause. Good luck, and welcome to the forum! Tell the doc who dx'ed you about this forum and what we said. Maybe he or she can learn something from browsing our pages.
    Last edited by annekat; 07-12-2016 at 09:28 AM.
    Anne, dx'ed April 2011

  2. #12
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    The diagnosing doctor can call any expert on the VF expert list and get advice on what meds to start. The expert i see didn't see me till after i was well along in my treatment and close to remission but he consulted on my treatment along with a couple other experts on how to best treat me.
    Knowledge is power! Wisdom is using it to make good decisions!

  3. #13
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    I believe Addenbrooke in Cambridge is the premier wegs hospital in the UK, but I don't know that for a fact. We have several people on the forum who go to Addenbrooke and seem very happy with it. One of those is Geoff . You can send him a PM by clicking on the link (his name) in the previous sentence. Geoff is on here frequently, so he might see your post.

  4. #14
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    Dr Jayne (Addenbrooks) is the man. Worth getting your consultant to either refer you to him or consult with him if they are unsure about what's best for you.
    Behind every great man is a woman rolling her eyes.
    Jim Carrey



  5. #15
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    Hi Bettie! I am also one of the ones that have a saddle nose. That's where mine started. In my experience I started having problems now with my mouth. Not everyone gets the same issues. I am just letting you know my experience. They won't even think about fixing my nose anytime soon. The Dr's told me that it may not work because they weren't sure that it would take because I am having more problems. My gums starting dying and went over my teeth which I had surgery September 2015 thought I was in the home stretch until this week my jaw bone started breaking off and coming through my gums. I had surgery yesterday and they removed the dead pieces that died and broke from my jaw. I don't have enough support to hold my jaw bone and teeth in so we have to do cheek implants to make everything better. Like I said everyone is different this is just my experience.

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