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Type: Posts; User: Lilly

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  1. Replies
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    Re: baha hearing loss questions

    Thank you Helen for the up front information....its EXACTLY what I needed!! I have received so much great information about the different ways our ears are affected by wegeners, as well as other...
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    Re: I love someone with Wegeners

    Dear Lynette and Husband, I am crying as I read your post.....Your story is a hard one to read, but also your love for your husband is beautiful. I agree with all the posts you have received from the...
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    Re: baha hearing loss questions

    Thank you! I am still amazed that my EENT (who must have knowledge of these different options) has never ever talked with me about any of them. I am so grateful for this forum, as its people are...
  4. Re: Has anyone been treated with "Decadron"? (Dexamethasone)

    Hi Ebon, your post is very interesting to me. I have been on low dose prednisone since 1990. I am having long term side effects from it now, but you are the first I have heard of (I am sure there are...
  5. Thread: Transplant

    by Lilly
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    Re: Transplant

    Gliders, my heart is broken for you. I'm so sorry, and sending thoughts and prayers....miracles still happen, I'm praying for one for you. Blessings, Lilly
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    Re: Ear Implants

    Dear Helen, I am so sorry about what has happened to you �� Everything you go through with your disease, and then some money hungry, careless, horrible "doctors"?,,,,take advantage of you. And I get...
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    Re: baha hearing loss questions

    What testing is done before being able to get a BAHA?
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    Re: baha hearing loss questions

    Hi drz, I have read and re-read your post, because I am having so much trouble with my ears. One thing I have been concerned with is that my EENT has not done any tests to look at the internal parts...
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    Re: Low white count on Rituxin

    Hi, finally back. I went to Rheumy Tues, 22nd. He is a good doctor, but he likes to "think" about things and not make hasty decisions. The shingles thing kinda messed up his thinking. He called in...
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    Re: baha hearing loss questions

    Thank you drz and all the other weggies for the information! It has helped my understanding of the differences of the BAHA and the Cochlear. My ENT does not seem to offer any advice for me except a...
  11. Re: Has anyone been treated with "Decadron"? (Dexamethasone)

    Thank you for your reply!! That is basically what my Rheumy told me when I was showing inflammation and possible flare during the Thanksgiving Holidays....He wanted to try the Decadron, saying it was...
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    Re: baha hearing loss questions

    Yes! Just going to the grocery store is a challenge for me TOO! I just turn and run right into people! Driving is difficult too. It really does effect so much, especially when its different and...
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    Re: Low white count on Rituxin

    Thank you Alysia, I always feel like its wrong to say "Limited Wegeners", because my kidneys ARE affected, just not as much as my face, ears, throat and lungs. Usually, having red blood cells in my...
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    Re: baha hearing loss questions

    For some reason I have never heard of the BAHA. My EENT seems defeated by my ears. I have had E tubes over the years as most of us have. My left ear now has a perforated ear drum. My right ear has a...
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    Re: some gpa symptoms- ENT advice

    I have had "limited wegeners" since 1990, and your sinus issues sound exactly like what I have experienced over the years. I have never had major nose bleeds, just crusting and after rinsing and...
  16. Re: Has anyone been treated with "Decadron"? (Dexamethasone)

    My doctor is now put me on methotrexate, oral, low dose for a month. I still take 10mg prednisone, I have never been able to get off prednisone completely, or I will flare. So I have been on it low...
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    Re: Low white count on Rituxin

    Hi jackiekc, I have not been on the forum in awhile, but I saw your post and I have the same issue. Of course, its the same but different! LOL.....I have limited Wegeners, diagnosed in 1990. I have...
  18. Has anyone been treated with "Decadron"? (Dexamethasone)

    Hi Everyone, I have never seen the medication "Decadron" ever mentioned as being used for a flare. I have posted in other threads about a flare I had through Thanksgiving and Christmas, and it was a...
  19. Thread: Lung nodules

    by Lilly
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    Re: Lung nodules

    Hi whatthewhat, I had never heard of that, but looked it up and am very curious. I wish I had seen your post before today, as I had my 3 month appointment with my Rheumy yesterday....I could have...
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    Re: Ear issues - experiences

    I have just read this thread for the first time....I am having problems with my ears, and have been for some time. It seems that when they started giving me real problems around 2009, (I THOUGHT I...
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    Re: Anyone have the same lung problem?

    Hi friends, thank you for all your support, information, and just being there for me.....So to follow up on my EENT appointment on Mon. Feb. 5th, where I was wanting to know if I may have tracheal...
  22. Thread: Lung nodules

    by Lilly
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    1,339

    Re: Lung nodules

    Hi im so blessed, I had several tumors in 1990 when I was admitted to the hospital, and in the process of trying to diagnose me, I had a needle lung biopsy into one of the tumors. I came back non...
  23. Thread: Lung nodules

    by Lilly
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    Re: Lung nodules

    Hi, I had a CT scan of lungs about 2 years ago...and it said the same type of tree branch with spiculated spots or pattern.....I have a copy of that ctscan somewhere. I'm going to share it when I...
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    Re: Anyone have the same lung problem?

    Hi Alysia, Thank you, and all of you other friends, who have responded with information, experience with what I am going through, and support. I am sorry its taken me so long to respond.....I feel...
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    Re: Anyone have the same lung problem?

    Good morning hellojulie, I am enjoying talking with you also, and you are super sweet! Even though our diagnosis dates are very far apart, I feel we can still learn from each other. I agree with you...
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