JanW
02-22-2010, 03:08 AM
Since I've come here I've been thinking a lot about how we nag people to get to a WG specialist, and how we also know that there aren't hundreds of them in the world. There could be people here posting, or lurking, who think that there's no way to travel across the country for a specialist -- they may not have the money, the insurance, support, whatever. I thought it would be helpful for the newly diagnosed, or the people whose own docs are on the fence about whether or not they actuallly have Wegs, to get some tips from us about what they can do in the meantime (not that we will stop nagging!) because there is still a big space between intake at JHU, Mayo or wherever and seeing the PCP that is in your plan who doesn't even know what kind of bloodwork to run, or what symptom to look for. I think people can get help, or at least not do harm to themselves, until they can get to a center. Full disclosure: being in the USA, I'm using US terms, and assuming a US healthcare model here. I can't speak to how it works in other countries.
I'll start:
1. if anyone other than a rheumotologist is trying to treat/diagnose you for WG, get to a rheumotologist. And preferably a rheumotologist associated with a large teaching hospital, if that's available to you in your area, not the solo practioner who mainly treats RA. At least this person may have seen WG before, and be willing to consult with Vasculitis Foundation experts on your condition, than the guy who is also trying to run his office and has a four month waiting list. Be willing to travel a little for this. This person should ideally be guiding your care and prescribing the meds, not an ENT, PCP, or pulmo.
2. Don't delay in getting the blood work done. Even though negative C-ANCA and P3 don't rule out the disease, having positive in either of those numbers means a much greater liklihood that you have this disease.
3. All that wheezes isn't asthma. Boy, I wish I had taken this one to heart! I know that many of us on here have been diagnosed with asthma, and all I can say is that anyone who is suspected of having WG should also have an ENT do a partial bronchoscope so that they can check your throat for stenosis, a rare but classic symptom of WG. This is very easy for an ENT to see with their naked eyes, and a skilled clinician can get all the way down and tell you how much of the airway is open (even someone who can't go all the way down your throat can order imaging that will show the stenosis). If you are experiencing breathlessness, and are suspected of having WG, have this test done.
Any others?
I'll start:
1. if anyone other than a rheumotologist is trying to treat/diagnose you for WG, get to a rheumotologist. And preferably a rheumotologist associated with a large teaching hospital, if that's available to you in your area, not the solo practioner who mainly treats RA. At least this person may have seen WG before, and be willing to consult with Vasculitis Foundation experts on your condition, than the guy who is also trying to run his office and has a four month waiting list. Be willing to travel a little for this. This person should ideally be guiding your care and prescribing the meds, not an ENT, PCP, or pulmo.
2. Don't delay in getting the blood work done. Even though negative C-ANCA and P3 don't rule out the disease, having positive in either of those numbers means a much greater liklihood that you have this disease.
3. All that wheezes isn't asthma. Boy, I wish I had taken this one to heart! I know that many of us on here have been diagnosed with asthma, and all I can say is that anyone who is suspected of having WG should also have an ENT do a partial bronchoscope so that they can check your throat for stenosis, a rare but classic symptom of WG. This is very easy for an ENT to see with their naked eyes, and a skilled clinician can get all the way down and tell you how much of the airway is open (even someone who can't go all the way down your throat can order imaging that will show the stenosis). If you are experiencing breathlessness, and are suspected of having WG, have this test done.
Any others?