Do you have a Wegener's Specialist?

[Jack]

As title - is the doctor in charge of your care what could be termed a "specialist" in treating Wegener's or is he (or she) a more general Rhumy or something?

[Hammy8241]

General i think but not asked actual question. Nice legs though!

[Jack]

Nice legs though!

Should I start another Poll?

[Hammy8241]

Should I start another Poll?

No Jack ...... all mine......................

[pberggren1]

Even though I am the only Wegs patient that my Internist/Nephrologist sees he is still classed a Wegs Specialist because he has been involved in the diagnosis and treatment fo hundreds of Wegs cases back in the UK and he keeps in close contact with his fellow doc buddies back in the UK and keeps on top of the latest research. I am very blessed to have him. He might be getting another Wegs patient soon though as I have found another fellow Weggie right here in Swift Current.

[Jack]

Do you get 10% agent's fee?

[pberggren1]

Do you get 10% agent's fee?

I wish I did Jack.

[JanW]

Your doctor Jayne has certainly been mentioned here at the conference, Jack. Both my rheumy and ENT are WG experts though neither operates out of a major vasculitis center. They are both in major teaching hospitals and are academics as well a physicians, which I think is an important distinction for our US members. When you get someone who is in private practice in his own little world and not keeping up with changes in the standard of care in this disease you will be in real trouble.

Langford says that if a rheumy has five WGs on their current caseload that's pretty astounding. Docs in vasculitis centers have maybe 100 on the books and have seen hundreds in their careers.

[pberggren1]

My wegs doc has just me but has seen hundreds before.

[Jack]

I think that the Poll, such as it is, shows that those consulting a specialist are in the minority. This is not such a good result considering the importance many of us attach to this aspect of treatment, but it just reflects the facts of life - specialists are few and far between and it is not in the power of most patients to get to see one. Are we in danger of making things worse by stressing this aspect all the time and perhaps making people feel guilty or inadequate if they are not able to comply? Or is pressing the point justified because it might save someone's life? After all, we have seen members die with a suspicion that poor standards of treatment may have contributed.

In a similar way, are we piling on pressure by telling people that they should be eating more X, Y and Z and taking drugs A, B and C while avoiding................? Or is this all good and welcome advice? Sometimes it is hard to steer the right path between helpful and judgemental even when you have the best of intentions.