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Thread: Hello - Another one from South Africa

  1. #11
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    Quote Originally Posted by rebekah View Post
    sectech1, welcome to to forum. If you click on one of the topics such as "New Member Introductions" you should see a blue button on the left side of the page (under the yellow notes) that says "Post New Thread." If you click that you can create your post.
    Yes, and you generally need to go to Forum at top of this page, to find your list of topics to choose from. But since we are already on New Member Introductions in this thread, you can just click on that at the top of this page and it will take you there, where you will see the Post New Thread button that Rebekah mentioned.
    Anne, dx'ed April 2011

  2. #12
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    Hi all

    Thank you so much for welcoming me! It feels great to not be alone out there anymore. The doctors made such a fuss about the rearity of this disease that I was left feeling all alone and dreadful. This forum is absolutely great for gaining knowledge about WG and learning from people also suffering from it. Although a bit gross, I loved the thread about boogers! The same stuff comes out of my nose - and again it made me feel so much better that it's not just me.

    I use a sinus rinse for my nose, but I think I was over doing it a bit as I now have an infection in my left ear. Luckily I'm seeing my ENT tomorrow, so hopefully he can do something about it. Although this ENT was great in making the right diagnoses right away, he admitted that he has no experience with this disease and referred me directly to an Internist. My problem is that between this Internist and the Rheumatologist, nobody seems to want to take charge and both wants to be seen more as in an advisory role. Perhaps this is why I am currently on both MTX and Imuran. I will definatly take this up with them.

  3. #13
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    Marius, you might contact the others from South Africa on the forum and see if they can recommend any doctors near you who would be willing to take you on as more than just advisors. And your docs themselves may be able to help there. Check the Weggie Map link at top of page to see where these members are.

    I'm glad you liked the booger thread, although I did not go there myself. The fact that some enjoyed it should be encouraging to those who want to post their favorite booger pics.

    Some of us do multiple sinus rinses at one time, because sometimes it's the only way to get the real monsters out. I don't know if it could cause an ear infection, unless there is something unsanitary about your procedure. Ear infections often happen with Wegs because the Eustachian tubes are often swollen shut so that they can't drain properly and fluid builds up in the middle ear which may harbor infections.
    Also, Wegs can mimic infections. So I'm not sure which scenario would be most likely.
    Last edited by annekat; 11-12-2013 at 10:05 AM. Reason: changed word
    Anne, dx'ed April 2011

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    Hi Marius and welcome to the forum

    I live in Johannesburg. I think because there is no vasculitis center here is SA (where we with WG could congregate and be treated and where the doctors would get experience with vasculitis ) you will never find a doctor here who has a lot of experience with WG. Having said that, it is a Rheumatologist who has the greatest knowledge of drugs used, their side effects and how to monitor your body's response to your treatment by ordering the relevant blood tests at frequent intevals. You will still need to consult with your ENT for specific treatment for your ENT symptoms but the Rheumatolologist should be your main doctor and he should take charge. He is trained to do that.

    My rheumatologist has treated only a few WG patients in his career. Because I have lung and kidney involvement I also consult with a nephrologist and pulmonologist at least annually and more often should I have a problem. The Rheumatologist I see more often and he checks my kidney and liver functions, FBC and inflammation markers. He prescribes my drugs, adjust the dosage if required and will refer me to the relevant specialist should he be concerned.

    I am surprised that your Rheumatologist does not want to take charge. Maybe you could consult with another. Probably Rheumatologist in the Jo'burg area will have come across more WG patients than the ones in your neck of the woods, Witbank being a small town. If you are prepared to travel I can give you a few names.

    Rose

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    Thank you all for the usefull information sharing, and Rose for replying just over the hill from Johannesburg! Witbank is about 140Km from Johannesburg so to travel there is not that much of a problem. I think it is still very early days, so I will wait until my next visit at least before starting to look for a new Rheumatologist. Her practice is in Pretoria, so I travel in any case about 120Km to see her! Maybee we just did not understood each other 100% the first time - which is possible as I was still reeling from the news of this disease. If not, I will ask you Rose to share your doc's details.

    I went to see my ENT today and are very pleased as he says my nose and sinuses are actually doing quite well and is looking much better than a month ago.
    A pity that he also said that because of the damage already caused my nose will probably never be as it was. But at least I am reacting well on the current meds -although being on 2 types of imuno suppressants which I still need to take up with the Physician. I dropped the prednisone from 30mg to 25mg as from today. Let's hope for the best.

    I am seriously looking for a better medical aid scheme at the moment as this caught me by surprise -being quite healthy and all before this. With all the tests and stuff before diagnoses the medical aid got depleted and now that we actually knows what it is I have to pay for everything myself. I do not know how the medical insurance works in other countries, but it seems that here in South Africa WG is not recognised as a chronic disease, so you end up paying for almost everything yourself after the elementary benefits are depleted. I've heard that the serious meds are extremely expensive and feel that I should try to get the best medical cover now already - without breaking the budget of course.

    Don't you guys sometimes feel -especially with the forum and all- that you are getting too much involved into this disease? What I mean is, don't you feel that you are consumed by it to such an extend that WG and all that can go wrong is always on your mind? Maybe I feel this way because I was diagnosed recently but it is as if I can not think about anything else anymore!

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    Quote Originally Posted by Marius View Post

    Don't you guys sometimes feel -especially with the forum and all- that you are getting too much involved into this disease? What I mean is, don't you feel that you are consumed by it to such an extend that WG and all that can go wrong is always on your mind? Maybe I feel this way because I was diagnosed recently but it is as if I can not think about anything else anymore!
    With this disease's vague and sometimes insidious symptoms, it's easy to be paranoid. However, that paranoia can be a lifesaver if you ask your doctor about odd symptoms instead of ascribing them to something else, such as aging or over-exertion.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  7. #17
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    Marius, I think you are right that the forum keeps me extra involved with this disease. I probably spend too much time on here when I need to be doing other things. But without it, I'm afraid I'd be so lost and clueless, and that is a scary thought. I remember when I was first dx'ed and found the forum, it was such a relief to see the many different manifestations of the disease and realize that I was doing pretty well, that it could be a lot worse, and that there was hope for returning to a fairly normal life. Of course, I know some people have a more severe case and I don't know how they feel about this. But there are some on here who have almost died and are now functioning quite well in life. Having access to information and communicating with those who have been there makes all the difference in the world, I think. And you will probably think about it less as you get WG under control and can resume more of your former activities. Best wishes to you!
    Anne, dx'ed April 2011

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    Quote Originally Posted by Marius View Post
    Don't you guys sometimes feel -especially with the forum and all- that you are getting too much involved into this disease?
    unfortunately, this disease "involving" me too much
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  9. #19
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    Quote Originally Posted by Marius View Post
    Hi all

    Thank you so much for welcoming me! It feels great to not be alone out there anymore. The doctors made such a fuss about the rearity of this disease that I was left feeling all alone and dreadful. This forum is absolutely great for gaining knowledge about WG and learning from people also suffering from it. Although a bit gross, I loved the thread about boogers! The same stuff comes out of my nose - and again it made me feel so much better that it's not just me.

    I use a sinus rinse for my nose, but I think I was over doing it a bit as I now have an infection in my left ear. Luckily I'm seeing my ENT tomorrow, so hopefully he can do something about it. Although this ENT was great in making the right diagnoses right away, he admitted that he has no experience with this disease and referred me directly to an Internist. My problem is that between this Internist and the Rheumatologist, nobody seems to want to take charge and both wants to be seen more as in an advisory role. Perhaps this is why I am currently on both MTX and Imuran. I will definatly take this up with them.
    Welcome to the forums Marius!

    I am glad you enjoyed the booger thread. After about a month of treatment, and a couple of ENT visits, I no longer am getting any "Monsters" coming out of my nose. The sinus rinses are very important for me, as I believe they, combined with good treatment and the right medicines, are what has prevented any further crusting and huge chunks from coming out!

    I have a few doctors now, and I have found that the most important thing for them to do is COMMUNICATE with each other. All of my doctors are on the same page, and nobody is stepping on each others feet.

    It is great to hear that things are improving for you, and I am sure that they will continue to improve!

    -Spaceflightaddict
    "It takes less muscles to smile than it does to frown!"

    -A quote to a doctor from me, in the hospital, while giving him a Bells Palsy smile (I was on some gooooood drugs at the time)

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