my sister....

[moyan]

I can't respond to you, but just found something to click. When I read something and want to get in touch it asks me to click one of the symbols above and I do and nothing happens. I have only been on a few days, so there is lots to learn. Thanks for your response, HOORAY, a step forward!

[Sangye]

If you want to reply to this message (for example) :
1) Click "Quick" at the bottom right of my message
2) This opens a window called "Quick Reply."
3) Type your reply.
4) Click "Post Quick Reply" underneath your message. If you don't click that, it won't save your message.

[moyan]

Wonderful!! Now, if I could find messages sent to me, I would forget WG!!

[Sangye]

You can edit your personal options so that you get an email each time someone adds a comment to a thread that you've posted a message on.
1) Click on "Quick Links" at the top of any page
2) Click "Edit Options" This will take you to your personal options.
3) Under "Messaging & Notification"/ Default Thread Subscription Mode : Select "Instant Email Notification" from the drop-down menu.

That Edit Options page also lets you choose how to be notified of private messages that other members might send you.

[Lila]

I hope everyone is having a great holiday! Im taking my sis to a Rheumatologist tomorrow. We both know that she needs to get to JHU but it's so hard to get an appointment. They will not even make the appointment until they have a note from her physican and ALL medical records (we have those). So, we are hoping that her Rheumatologist will give her the referral note she needs. Also, her Rheumy is not that pleasant of a doc...but we're hoping he will start her on meds too...until she can get into JHU. I do have a question (and I know Sangye will know the answer to this!) How do you know when your in remission with Weg's? Any replies would be great!!

[Sangye]

Since I'm having a rough day, I'll let the others field the question about remission.

You may have to lean hard on that rheumy to get a letter quickly, but I would insist on it nevertheless. You may be surprised-- he might be very happy to get her to JHU, knowing he's in over his head (whether he admits it to you or not). Lots of liability issues when caring for Weggies, ya know?

[andrew]

How do you know when your in remission with Weg's? Any replies would be great!!

It can be difficult to quantify. It's a combination of how the patient is feeling and blood results. Note that being in remission does not necessarily mean that you're drug free. It just means that as far as blood results and patient response goes, you're symptom free

[Lila]

Im sorry that your having a rough day Sangye. : (
I hope you feel better soon !!

[Lila]

Thanks Andrew! Is it the ANCA that needs to be checked? ...or something else? Oh, I do hope this doc tomorrow will give her the letter she need for JHU...can't it just be a quick note Sangye?...or does it actually have to be a 'letter'?

[andrew]

Yup, ANCA is the main one. Even then in some of us weggies, ANCA doesn't play a big part. In the end it'll be a comparison between her initial blood results and later ones over time as things start to balance out.

Also, remember that remission is something that we MIGHT get. It's not a certainty by any means. Having said that, I'm not in remission but I'm feeling groovy and can carry on with pretty much any of the shenanigans that I used to

As for the latter, if it's anything like here in Oz, the doc will have a template letter that he/she can fill out and give to you.