Reccommendations?

[Sangye]

Yahoo for getting rtx! I think your plan to continue on and see Dr Capizzi is great.

[Joy]

Our daughters rheumy is also on the VF website-Nancy Allen @ Duke. Our daughter wanted a specialist somewhere close that she could drive due to time constraints & cost. We liked Dr Allen very much & she has seen many , many, more wg patients than the local drs. She also was involved w/ the study on Rtx which was another reason we chose her. I hope that your decision works out as well for you. The news abt. RTX is wonderful news -congrats! Keep on dancing & I hope you soon find peace of mind...

[misskay]

I considered Dr Allen, but she's about 375 miles from me... if I can't get in to see Dr Capizzi in Nashville, Dr Allen is next on my list

Hopefully some time next week I'll hear from my Rhumeys office, the drug company said they would be shipping out 4-5 doses of the Rxt to them asap, even though I have not been officially approved for the free drugs, only tentatively approved.

On another note... the bladder issue is cropping it's ugly head again. Started having discomfort and the other symptoms about 4am Saturday morning, so immediately started taking the meds the Urologist gave me last time. Hopefully we can nip it in the bud this time and not have to suffer for nearly a month like last time. Already had a follow-up appt set with the Uruologist for this coming Tuesday morning... thought about cancelling it last week as I thought the problem was resolved. Good thing I didn't :/

[Sangye]

Sorry to hear about the bladder pain coming back... Are you still on ctx?

[misskay]

no... haven't been on ctx since Dec 14th... that's why when things finally straightened out between Christmas and New Years I thought the problem was resolved and I wouldn't have to worry about it anymore. I'm stumped as to why it's coming back. I'm scrutinizing my diet from the past week to see if there was anything unusual or really acidic that might have triggered it in an already sensitive bladder.

[Sangye]

I'm so glad you have that appt on Tuesday...

[Palmyra]

Hello Misskay,
I love your expression, "I got to dance with the one that brung me,"!! Such an apt metaphor, BUT you are not at a dance My daughter and I practice great diplomacy negotiating between her 'local' rheumy, and her VF expert, all the time. The good news is these doctors did not ask you out on the date, you asked them. We need to remember, they get paid for their service and expertise. It is an expensive service, and just like any business, one can build a good, healthy, keen working relationship, and keep things on a business level at the same time. This is not personal to anyone but you. My daughter was able to receive Rituxin from Genetec for a period of time. Her first infusion was at Mayo, and the additional infusions (even the subsequent three in the induction phase,) were administered by her previously reluctant local rheumy.

And don't forget, we are all here to bully up for you. It is possible to state what your expectations are (needs,) and do so in a positve way that invites a cooperative relationship....much confidence and many hugs to you over cyberspace! (PS, pred is misery sitting on the back of strength)

[Sangye]

Wow, Palmyra, that was so well stated. Would you consider adding it to this thread: http://www.wegeners-granulomatosis.c...need-know.html

As we know all too well, too many newly diagnosed stay with docs who are not adequately skilled because they were the one who dx'ed them, or because they've finally established rapport.

[JanW]

Glad you got the medicine, Miss Kay.

I think Tim from Mississippi (I think it's Corinth, maybe you can do a search), sees or has seen the doc you are talking about. I know that he got really sick with WG before it was all diagnosed. Hopefully you can PM him and ask some questions.

Marta -- it's funny that you say that internists are the 'thinkers' of medicine, because that's exactly what the rheumys and the infectious disease (think House) docs say about themselves. They say that internists are just generalists that you go to when you have a cold or need a physical (of course it's more than that!). Rheum is known (at least in this country) as one of the more cerebral medical specialties. That's why it's so surprising to me when I hear how some of you have been treated -- my rheumy is the guy who is always telling you about the latest study, or really thinking about how to treat you. None of this, "well this is the way I've always done it" stuff.

[Sangye]

Internists are GPs so they see the full gamut of conditions and have to figure out which they can treat and which need to go to which specialist. They are generalists, but it means they are able to treat a wide variety of conditions and they "generally" look at the whole body instead of one piece. (I put that in quotations because financial pressures and insurance issues are forcing them to treat one condition at a time and ignore the entire person) There are lousy internists who can only be trusted to treat simple infections.

Rheumys have the reputation of being thinkers because they get all the patients no one else can figure out. AI diseases are all quite sneaky. Wegs is more sneaky than most. AI diseases have many overlapping symptoms and you can even have overlapping AI diseases. There are lousy rheumys out there who specialize in a few of the more straightforward conditions like RA. Once it's dx'ed, it's not rocket science to treat. It's easy to stay on top of the research by reading a few papers a year. For Wegs you need a rocket scientist.