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Thread: Angry and confused

  1. #11
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    That's most likely what I will do if my rheumy gives me the brush off in May. Or if I get sick before then.

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    Wow, you've done the round of meds that's for sure. At this point my suggestion would be to definitely get to an academic center such as Mayo or Cleveland clinic. I assume you're on Tri-Care for insurance. I'm not sure how it works for referrals. If your doctors are open to consulting with docs from the vasculitis foundation that would work too. However, your rheumy doesn't sound like she would do that. I would think with where you're at your rheumy would want to see you once a month at least. It sounds as if she can't figure it out so she is washing her hands of the situation. So I like others would suggest a new rheumy. Sounds as if you definitely still have a lot of inflammation going on. Are you taking Ibuprofen or any over the counter meds for it? They might help a little to knock out the worst.

    I'm getting ready to do a second opinion at Mayo in Jax myself. However, I'm going to request an appt with a pulmonologist and a rheumatologist. They can schedule them both on the same day. I'm about 3 hours away and plan to go up the night before and spend the night then drive home the next day. You're a little further and might have to spend two nights, but I think it would be worth it in your case. It will take a month or two before you can get in at Mayo, I would make the appt now and cancel if you need to. Good luck whatever you decide to do and please keep us posted. Hugs to you.
    Last edited by windchime; 03-16-2014 at 07:22 AM.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


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    Quote Originally Posted by windchime View Post
    It will take a month or two before you can get in at Mayo, I would make the appt now and cancel if you need to.
    In addition, if you really want to get into Mayo earlier than the appt they give you, call everyday...someone always cancels with them...was just about 2 months out on appt they initially gave me, kept calling, got in in 3 weeks...having them on your side along w/good locals docs is your best bet for sure.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Hi Jaypfei, a ANCA reading of 148, is fine as long as your CRP (infection) is low, I would still get a second opinion, elsewhere, if possible, because not all doctors are mistake free here's a piece out of The Churg-Strauss Syndrome Association, that might help.

    Discussion among members of the CSSISG about ANCA test

    To add to the confusion: the literature shows that some vasculitis patients have continuously positive ANCA without disease activity, while others test negative on ANCA even when they do have active disease.

    Now, what does that mean for us, should we pay attention to it, or not?
    Most of our doctors check eosinophil level, CRP, sed.rate etc. very regularly, and ANCA level seldom, or not at all.
    What vasculitis specialists seem to agree on is that the ANCA test could provide valuable supportive evidence for a vasculitis, meaning that being tested ANCA positive could be helpful, if there is still doubt, in diagnosing an autoimmune vasculitis.
    When it comes to the ANCA test being useful in monitoring disease activity there seems to be some controversy, and the specialists are less certain. A significant rise in ANCA may proceed a relapse, but this is not always the case, so a persistence of or a rise in ANCA is not a definite warning signal for disease activity!

    It seems reasonable to say that the ANCA test - for the time being - should at best serve as a complementary piece of information to a thorough clinical assessment, evidence of disease activity, and the measurement of inflammatory markers, such as CRP.

    Regards Woz...

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    Quote Originally Posted by Dirty Don View Post
    . I'm considered a 'poster boy' at Mayo here in PHX due to my 'amazing' non damaged recovery of badly damaged lungs. My pulmy just loves me
    same here
    Alysia
    dx 2008


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  6. #16
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    An update on my rheumy. I received a letter from her yesterday, April 26, stating that she valued me as a patient, and that my appt on May 21 would be my last as she is leaving the medical group that I currently go to off base. She also enclosed a list of other rheumatologist from Panama City to Pensacola.
    I'll be seeing my pulmonary Dr on base this Wednesday, and give him a copy of the letter so he can help me with a referral. Don't you just love having to start from square one? I'm going to look at it as a blessing, especially after my last appt. Maybe a new Dr will actually listen to me and not keep me on a roller coaster of treatment and taking me off drugs too soon.
    Last edited by Jaypfei; 04-28-2014 at 11:32 AM.

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    Quote Originally Posted by Jaypfei View Post
    An update on my rheumy. I received a letter from her yesterday, April 26, stating that she valued me as a patient, and that my appt on May 21 would be my last as she is leaving the medical group that I currently go to off base. She also enclosed a list of other rheumatologist from Panama City to Pensacola.
    I'll be seeing my pulmonary Dr on base this Wednesday, and give him a copy of the letter so he can help me with a referral. Don't you just love having to start from square one? I'm going to look at it as a blessing, especially after my last appt. Maybe a new Dr will actually listen to me and not keep me on a roller coaster of treatment and taking me off drugs too soon.
    Must be that time of year. I got a letter last week from my PCP saying she was leaving the practice and changing specialities to Infectious Disease. I just found her a year and half ago and I love her. I hate the thought of searching for a new one especially right now with so much going on with me. Good luck to you in finding a new qualified and interested Rheumy.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


  8. #18
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    Oh Cindy, I'm so sorry you're in the same situation. I started looking up the list of Drs that I was sent, and the one that has the best reviews doesn't have experience with vasculitis/Wegener's. The three that do have experience are old as Moses and not the best reviews. I don't want to see someone that will likely retire a year or two after I see them. I can't image any of us would. Hopefully Pulmonary Dr can help sort this out.
    Wishing you luck as well in your search for a new doctor.

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    Quote Originally Posted by windchime View Post
    Must be that time of year. I got a letter last week from my PCP saying she was leaving the practice and changing specialities to Infectious Disease. I just found her a year and half ago and I love her. I hate the thought of searching for a new one especially right now with so much going on with me. Good luck to you in finding a new qualified and interested Rheumy.
    I find replacing physicians stressful but often necessary as when you have several different specialists some one is often moving on or some times changes in insurance plans require it. I have started trying to build up dual coverage in some areas when i can so I will have a back up and won't be feeling bereft and lost when one leaves. I just lost my endocrinologist after several years and worried about finding one that would be willing to do all the paperwork necessary to get diabetic supplies when on Medicare. Over the last five years I have had to replace one physician a year from loss plus a couple others I had to fire for incompetence or lack of trust. I almost fired my pharmacy today but decided to give them another chance after they fixed their screw ups. I will just need to watch them closer to make sure they are doing things right and in a timely manner. They had done well until this year when they went through some growing pains from taking on new staff to gear up for another pharmacy closing down and hope they got bugs out now. Many of the problems seem from their web site and not actually pharmacy staff.

    Maintaining a good health care team is a necessary part of maintaining your health and often takes a lot of work. Some times it is difficult to know when to end a relationship and when to to try fix it or improve it to make it work better.
    Last edited by drz; 05-03-2014 at 02:02 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

  10. #20
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    Well I saw my pulmonary dr today. Was supposed to see him yesterday, but the weather and all the rain, they closed the base. Rescheduled for this afternoon. I gave him a copy of the letter that rheumy sent. We talked for a bit. Ideally the Mayo Jacksonville would be his choice but said military won't send me there. He's got some ideas on who he wants me to see in Pensacola. I'll give it a go. He also mentioned Ochsner clinic New Orleans? I'll have to look it up.
    He did another breathing test as I mentioned some issues that I've been having. Namely shortness of breath when out and about and even while talking. Lung CT scan next week. A referral for a new ENT because I've also had some really strange intermittent throbbing in ears. Anyone else ever experience that? As well as a referral for ophthalmologist. About 2 weeks ago had an incident where I had a prism like obstruction in field of vision of left eye. The periphral vision was strobing. Lasted about 20 minutes and then headache and tired. The vision in eye is off since incident.
    Anyway, that's where I stand at the moment.
    All the rain this way has left a lake on the side and back of yard. I swear I saw a periscope come up out there! Lol. Hopefully everyone affected by the weather is okay?

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