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Type: Posts; User: Minneapolismark

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    Well I sent you my cell number via private...

    Well I sent you my cell number via private message. Text me when you get in town and I will meet you someplace if I can do so.
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    I will be at the Mayo tomorrow, 2/21. I'm being...

    I will be at the Mayo tomorrow, 2/21. I'm being enrolled in a research study, and I'm also trying to get accepted into bariatric surgery.

    I'm the big guy wearing a bright tangerine (i.e....
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    Just a quick FYI... My Mayo Clinic bill just...

    Just a quick FYI... My Mayo Clinic bill just arrived today. The total cost for blood tests, two consults with Dr Specks, colonoscopy, lung functioning tests, neurological consult, opthamology, and...
  4. What to do about Mtx nausea, aches, confusion, etc.

    My pred is now stepped down to 12.5 mg. This is good but the pred was masking the side-effects of the Mtx injections. Any ideas how to combat the nausea, sweats, aches and confusion? Medicinal...
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    Sticky: Spammers? What?

    Spammers? What?
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    One other observation

    I did tell my doctor straight-up that I was going to the Mayo. I am quite certain he was happy to see me leave. I think it was very rewarding for him to diagnose an illness worthy of Dr. House, but...
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    I obviously can't speak for him, but in the...

    I obviously can't speak for him, but in the context of my two meetings with him this came up. At least for me in particular, he indicated that searching the web could lead me to draw erroneous...
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    BTW Dr. Specks is not a huge fan of Internet...

    BTW Dr. Specks is not a huge fan of Internet research.
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    Here is a quick followup to my Mayo visit. I had...

    Here is a quick followup to my Mayo visit. I had a couple of other health problems that had been lumped into my Wegener's symptoms but are unrelated. Now that they have been pulled out and are being...
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    Here is my biggest take-away from my trip to...

    Here is my biggest take-away from my trip to Mayo-- the disease is not the boss of me. WG is so big, vague, bizarre, and there is so much mis-information out there that it is very easy to get...
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    OK, so here is the summary from my visit to the...

    OK, so here is the summary from my visit to the Mayo clinic. The bottom line is that I am responding well to the meds and my disease is under control.
    * I need to keep on with the Mtx, pred etc....
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    Tickle me Elmo Disease Bert and Ernie atosis...

    Tickle me Elmo Disease
    Bert and Ernie atosis
    Strawberry shortcake disease
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    Giant Booger disease

    Giant Booger disease
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    Barney

    I do think Barney the Dinosaur is a good mascot because he sounds like his nose is plugged up.
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    I like it!!!!!

    I like it!!!!!
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    Renaming Wegener's Granulomatosis

    I was reading a discussion elsewhere about renaming Wegener's Granulomatosis because Dr. Wegener was a Nazi. Although I think it appropriate that an icky disease has an icky name from an icky guy,...
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    Please hang in there and get the help you need. ...

    Please hang in there and get the help you need. It took a lot for me to finally plug into the Mayo. I didn't think I had the physical endurance to come down here, but with the help of my wife I...
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    A Minnesota Gathering?

    There are several of us here from Minnesota. Would anyone be interested in a friendly gathering of some sort? I'm thinking it would be something low-key, located in the Cities. I have gained so...
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    Yep, it is all good. Just had a pred mood swing....

    Yep, it is all good. Just had a pred mood swing. ;)
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    Yep, the Mayo has a reputation for only accepting...

    Yep, the Mayo has a reputation for only accepting convenient patients. Don't know if it is true, but that is what they say. It started in the 1800's in response to a category 5 tornado here in...
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    OK, the first flaw in the Mayo machine... My...

    OK, the first flaw in the Mayo machine... My neurologist is their Wegener's guy in the neurology department. Great guy but he seemed to be unimpressed with the whole Wegener's motif. I have no...
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    Will do. You can also call the billing office...

    Will do. You can also call the billing office for an estimate.

    The interesting thing is that Dr. Specks determined the need for a colonoscopy based on my self-reported abdominal pain and change...
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    Just got out of my opthamology visit. Very...

    Just got out of my opthamology visit. Very thorough. Nice to have everyone know what Wegener's is. They seem to use he term "Wegener's Disease" which us probably more accessible.

    No eye...
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    Well I am not sure just yet. I haven't had my...

    Well I am not sure just yet. I haven't had my debrief yet, that will occur Friday. But I think they were cauterized. The knocked me out right away. Will let you know. I was still pretty high...
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    They cauterized some bleeding areas in my...

    They cauterized some bleeding areas in my intestine.
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