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    Re: Nice NYTimes article on chronic disease

    I am not a moderator of this group, but I have to say something: This is a helpful forum for people to share their experiences with a chronic illness. Definitely not a platform for political...
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    Re: Nice NYTimes article on chronic disease

    Thanks for posting that. Definitely resonates with me as well.
  3. Thread: Leukemia

    by Alias
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    Re: Leukemia

    No, Dorothea, but no doubt you have consulted Dr. Google and learned that this not unheard of. Hope you are OK.
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    Re: baha hearing loss questions

    An update here: I elected to avoid the invasive procedure. After a long delay, I and the audiologist got insurance approval to get the SoundArc by Cochlear. I am quite happy with it. Hugely...
  5. Thread: Second Opinion

    by Alias
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    Re: Second Opinion

    You are relatively close to both Rochester (Mayo) and Cleveland, if there is not a qualified specialist closer to you.

    Based on my personal experience, I would think twice about the nasal...
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    Re: Disease extension/spread

    Thanks all for the replies. Masha, I did see an ENT a few months ago. Everything in that department is stable, but not comfortable. Once GPA attacks the ears and sinuses, it's not going to get...
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    Disease extension/spread

    I was diagnosed with limited/non-severe GPA several years ago. I have been in a drug free remission for months and mostly feeling well. My symptoms have mostly been limited to annoying sinus/nasal...
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    Re: 5 months - DX/treated/ & in remission :)

    You are definitely a big success story, having been diagnosed early on and having access to high quality care and a great support network. (Personally, I'm thinking the four dogs might be a very...
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    Re: Just Diagnosed 13/12/18.

    Also, it's possible you would do OK with a conventional hearing aid. Bone conduction device works much better for me, but your ENT and/or audiologist will be able to help you figure that out.
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    Re: Just Diagnosed 13/12/18.

    Suzanne, regarding BAHA, there is an external, i.e. not implanted device called the SoundArc made by Cochlear. It is generally offered as a "demo" of how you might respond to the implant, but can be...
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    Re: Just Diagnosed 13/12/18.

    Hi Suzanne. Greetings from Alaska and another victim of this strange illness. My presenting symptom was also sudden hearing loss, initially treated as an infection. This was followed by terribly...
  12. Thread: Nasal rinses

    by Alias
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    Re: Nasal rinses

    Right, I was told by ENT to always use distilled or purified water and to sanitize the bottle every time. Seems like an easy and sensible precaution. The odds of getting something nasty or fatal...
  13. Thread: Nasal rinses

    by Alias
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    Nasal rinses

    https://www.cnn.com/2018/12/07/health/seattle-brain-amoeba-neti-pot-bn/index.html

    I stumbled upon this in the news yesterday. I recall from some long ago thread that some folks seemed to think it...
  14. Re: Curious...how many members work with this illness

    I left my stressful job shortly after being diagnosed. During that first year I really was not able carry on normal activities, plus, I hated my job anyway. As you all know, stress is major trigger...
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    Re: hearing loss/baha

    That's exactly right. It's just like the demo unit I was given before I had my surgery consult but is meant for long term use. No doubt the implanted device would be more effective, but this is...
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    hearing loss/baha

    Hi everyone, just updating on what I've learned about BAHA. I decided that for now I am not up for the invasive procedure/osseointegration option. I now have the external SoundArc device from...
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    Re: Genetic survey for rare diseases.

    If you are on the Vasculitis Foundation's mailing list, you are probably receiving periodic requests to update their survey. I've completed those.

    (Speaking of the VF, they publish a little...
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    Re: Prednisone questions

    I thought the alendronate or equivalent went hand in hand with prednisone use, or at least that's what I was told when I was on pred.

    The sleep issues and voracious appetite are hard to get past...
  19. Re: Looking for a Rheumatologist in the Cleveland Ohio area connected with UH

    The docs at Cleveland Clinic literally wrote the book on Wegener's. You could not do better than to get established with one of the docs Pete mentioned, but there may be others equally qualified...
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    Re: Low white count on Rituxin

    I've read that even without renal involvement, the mortality rate for untreated disease is 40% or more, and of course much higher with vital organ involvement. At least these days there is some...
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    Re: Low white count on Rituxin

    Gosh I think there is a lot of misunderstanding and some disagreement about this. Possibly it depends on timing and what other medications are being taken. I was told to get all the vaccines...
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    Re: baha hearing loss questions

    Just a couple thoughts: you could start with an audiologist to get a current audiogram to assess the extent and type of hearing loss you have. That would help guide your ENT as to whether you are a...
  23. Thread: Anniversary

    by Alias
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    Re: Anniversary

    Well, having met you, I have to concur that you look hale and hearty, despite all your challenges.

    I just saw a new rheumatologist up here. She has THREE autoimmune disorders herself, and...
  24. Re: Has anyone been treated with "Decadron"? (Dexamethasone)

    Dexamethasone is much more powerful than prednisone, I believe. I've seen it in the context of treating other illnesses in my family (like brain cancer) but I have not seen any other posts or...
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    Re: baha hearing loss questions

    I just had a consult with a BAHA surgeon yesterday, and am fairly certain I will proceed.

    I definitely sympathize with what you are going through, though fortunately I have not experienced the...
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