View Full Version : WG Spcialist Appointment

09-07-2009, 07:09 AM
Sorry that I don't post more but it is a full time chore to read all of the post that you guys put up plus I don't type nearly fast enough. I, like everyone else really appreciate the people on this forum that put a lot of time and a lot of yourselfs into responding to any and all. It is a lot of comfort to all that just follow all of the post and responses. It really is a lot of help to all.
Sangye I have finally gotten with a WG Specialist and have an appointment on Oct. 7th. I called and talked with a lady at the VF Foundation and she was very nice and helpful. I live in Baton Rouge, La. and the nearest WG Speacilist is in Birmingham, Ala. at the UAB Clinc (which is approx. a 6 hour drive). The lady at the VF said that she had meet the Doc at several of the VF meetings and says that she is very good. If anyone is looking for a specialist in the Southern area her Name is Dr. Barri Fessler.
My pulmanogilist and my ENT doc's are going to write introductions and backgrounds of my treatment so far along with the lung and sinus biopsies. Is there anything eles that I need to bring?

09-07-2009, 07:13 AM
Good for you, Dumpy! I hope we hear only good news from you from now on! Plus, it's good to have another report from someone who's used the Vasculitis Foundation to locate specialists. There seems to be a uniformly positive experience with them, something that'll help others in future follow through when someone (probably our Sangye!) recommends they contact VF.:):)

09-07-2009, 08:52 AM
Yes, I am known for my nagging about that!

I'm so relieved to hear you're getting an expert involved. You won't believe the difference. Not just in how well they understand Wegs, but in the hope they can bring you. Until I got to JHU, all my docs were so uncertain about treating me. Their fear was contagious.

Also bring copies of any other diagnostic test-- CT scans, x-rays, all lab work (they often need to see the trends), bone density scans, etc.... Bring the actual films (x-rays, CT, MRI) plus the reports for each. Many places will put CT, MRI, and even x-rays on one CD for you to take.

Make a brief list of your medical history, since it's hard to remember it. For the Wegs stuff, write dates, symptoms and diagnosis. Even though the docs will send a summary, the new doc will ask you every single thing and it's tough to remember it! Any specialist they send you to will do the same. I just add to mine whenever we change drugs, etc...

Here's an example from my own history :

Jan, 2006 : Fell hard on ice. 2 wks later onset of Rt Achilles tendon pain w/ walking. Treated as tendonitis (chiro, rest, nutrition) for 6 mos w/o resolution. No other symptoms
June, 2006 : Woke w/ Rt thumb jt severe pain, mildly red/swollen. No range of motion due to pain. No other symptoms. Resolved in 3 days, joint normal
June, 2006: Woke w/ same Rt thumb jt symptoms. 2 days later affected Rt 1st finger jt. Blood work (CBC, Chemistry, Sed rate, CRP, RA) all normal. X-rays normal. No other symptoms. Both resolved in 2-3 days, joints normal.

You can call the facility where procedures were done and ask how to get your records. It can take a week or two, so it's good to start now.