Who Does NOT Have A Rheumatologist/Weg's "Specialist"?

[Al]

That's the thing-- I never said it wasn't an important quality. I disagreed that it was more important than having a skilled doctor.

So we do agree! (I've noticed that when we don't, too bad about my theory.)

Al

[Kami]

I wouldn't be without my Rheumatologist, he coordinates everyone (all my specialists) and keeps it all working together for me. Here is a list of Rheumatologists in the Tulsa area. I would just start calling and asking what kind of programs they have for people that need financial help and I bet one or all of them could refer you to some place for help. Most clinics offers some kind of help or have some kind of connections to give to you.
Good luck!!

American College of Rheumatology Members inTulsa



Paul A. April, MD
6465 S Yale Ave Ste 516
Tulsa, OK 74136-7807
Ofc: 918-492-4800
Fax: 918-492-4857
Time Spent: Patient Care, Research Clinical
Disciplines: Internal Medicine, Adult Rheumatology



Carrie A. Gilstrap, DO
Rheumatology
1430 Terrace Drive
Tulsa, OK 74104
Ofc: 918-748-8024
Time Spent: Patient Care, Research Clinical
Disciplines: Adult Rheumatology



Debbie A. Gladd, DO
Oklahoma Ctr for Arthritis Therapy & Research
1430 Terrace Drive
Tulsa, OK 74104
Ofc: 918-693-5872
Fax: 918-497-3149
Time Spent: Patient Care
Disciplines: Internal Medicine, Adult Rheumatology



Robert F. Howard, MD
Oklahoma Physicians Group
664 W 78th St
Tulsa, OK 74132-2620
Ofc: 850-384-5794
Time Spent: Patient Care, Research Clinical
Disciplines: Adult Rheumatology



Timothy L. Huettner, MD
5555 E 71st St Ste 7100
Tulsa, OK 74136
Ofc: 918-491-9007
Fax: 918-491-9759
Time Spent: Patient Care, Teaching
Disciplines: Adult Rheumatology



Lawrence A. Jacobs, MD
Rheumatology
Rheumatology Associates
5555 E 71st St #7100
Tulsa, OK 74136
Ofc: 918-491-9007
Fax: 918-491-9759
Time Spent: Patient Care, Teaching
Disciplines: Adult Rheumatology



Michael A. Malloy, MD
Warren Clinic
6160 South Yale Ave
Tulsa, OK 74136
Ofc: 918-495-2695
Fax: 918-495-2660
Time Spent: Patient Care, Teaching
Disciplines: Adult Rheumatology



Alan L. Martin, MD
1919 S Wheeling Ste 606
Tulsa, OK 74104
Ofc: 918-748-7540
Fax: 918-748-7853
Time Spent: Patient Care, Research Clinical
Disciplines: Adult Rheumatology, Pediatric Rheumatology



James D. McKay, DO
Okl Ctr for Arthritis Therapy
1430 Terrace Dr
Tulsa, OK 74104
Ofc: 918-748-8024
Fax: 918-748-8249
Time Spent: Patient Care, Research Clinical
Disciplines: Adult Rheumatology, Pediatric Rheumatology



Sara L. Newell, MD
Warren Clinic
6160 S Yale
Tulsa, OK 74136
Ofc: 918-497-3140
Fax: 918-497-3295
Time Spent: Patient Care
Disciplines: Adult Rheumatology, Internal Medicine



Richard K. Robinson, MD
Muskogee VA Medical Ctr
9322 E 41st
Tulsa, OK 74145
Ofc: 918-628-2539
Fax: 918-628-2508
Time Spent: Administration, Patient Care
Disciplines: Adult Rheumatology, Internal Medicine

[pberggren1]

I would not want to be without my doc now. I truly think he is the best. I know he likes to learn. He even said to me the best way to learn is from the patient. We have formed a very good relationship. We are good friends now. I see him very often so this makes it much easier for me. And on top of it all he is one of the best Wegs specialists in the world.

Before I met him, just a few days in fact, I was getting ready to go to Toronto to see Dr. Carette. I felt I had no choice but to go see a Wegs specialist. I coudl have had my family doctor consult with him or another one listed with the VF but I felt it would be best if I saw him in person. It was going to cost me a lot. About 1500 bucks, but I knew it was going to be worth it.

I know many cannot afford to travel. But if your family doc or local specialist is not willing to consult with a VF specialist then find a new one.

[RudiK]

I do not have a Rheumatologist/Weg's "Specialist", I see an internist and a kidney doctor. It was the internist who initially diagnosed the WG and the kidney doctor took from there. So far they did very good as far as I can determine. I was diagnosed April 2nd and the WG is now in remission.

[annekat]

One thing I've learned on this forum is that not all rheumatologists know much, if anything, about treating Wegener's, and in fact, most don't, so "rheumatologist" does not equal "Wegs specialist" at all. I go to a pulmonologist for my Wegs treatment and things are good so far, but I know I should have someone closer to being a Wegs specialist in the long run. Like a rheumatologist with a special interest in vasculitis who is willing to consult with established specialists. There are two or three rheumatologists in my town, but I have no reason to think any of them would be at all suitable for treating my Wegs. Rheumatoid arthritis is a very common autoimmune disease, and I'm assuming that is a large part of the focus of their practice. In fact, one of them in my town operates under the title of "arthritis clinic". I think I'd need to go to a larger city to get one that could properly deal with Wegs. But I'm not ruling out the ones in Tulsa listed above, since that IS a larger city and there are a lot more of them to choose from.

[me2]

Wow, I finally pounded through and got onto the site. Too bad it is so late and I must get to bed soon. I just wanted to comment on something Annecat said that I think adresses part of the problem here. "so "rheumatologist" does not equal "Wegs specialist" at all."
This is very true. My high brow internal medicine doc of 30 years told me about a year ago that WG people really went to rheumys by default - not because that is where they belonged. I think being a Reumy is the start of a WG specialist if they want to be but what makes a WG specialist is taking a special interest, extra education and seeing a large number of WG patients.
Experience in seeing patients seems to me invaluable. Too few patients and it is unlikely that someone will 'get' this disease.
Like others I have suffered in the care of those willing to learn and truely careing - that is not enough for me any more.
I've been sick too long and damaged too much. I would hope for others that they can skip this by seeking someone with true WG expertise. It is a question of having high goals of care and then doing the best you can under your circumstances.

It helps a great deal that others here take the time to share their experiences. thank you

[Al]

One thing I've learned on this forum is that not all rheumatologists know much, if anything, about treating Wegener's, and in fact, most don't, so "rheumatologist" does not equal "Wegs specialist" at all. I go to a pulmonologist for my Wegs treatment and things are good so far, but I know I should have someone closer to being a Wegs specialist in the long run. Like a rheumatologist with a special interest in vasculitis who is willing to consult with established specialists. There are two or three rheumatologists in my town, but I have no reason to think any of them would be at all suitable for treating my Wegs. Rheumatoid arthritis is a very common autoimmune disease, and I'm assuming that is a large part of the focus of their practice. In fact, one of them in my town operates under the title of "arthritis clinic". I think I'd need to go to a larger city to get one that could properly deal with Wegs. But I'm not ruling out the ones in Tulsa listed above, since that IS a larger city and there are a lot more of them to choose from.

Yes, Anne, As they say, it is not the size of the wand that matters, but the magic of its user.

Same with doctors; same with much in life. We had our anniversary dinner tonight--41 years. Our daughter picked up the check. Must have done something right. We don't live forever, individually, but when you can make life work for someone else, that is a whole lot of magic.

Al

[annekat]

Yes, Anne, As they say, it is not the size of the wand that matters, but the magic of its user.

Same with doctors; same with much in life. We had our anniversary dinner tonight--41 years. Our daughter picked up the check. Must have done something right. We don't live forever, individually, but when you can make life work for someone else, that is a whole lot of magic.

Al

Al, Congratulations and Happy Anniversary! 41 years is a long time.

Anne

[Sangye]

Like others I have suffered in the care of those willing to learn and truely careing - that is not enough for me any more.
I've been sick too long and damaged too much. I would hope for others that they can skip this by seeking someone with true WG expertise. It is a question of having high goals of care and then doing the best you can under your circumstances.

Well said, Kirk. Glad you were able to bust through to post it!

[jola57]

Congratulations Al, wow 41 years. Rheumys are our docs by default since they deal with painful joints, arthritis, rheumatism and dispense our friendly drug cocktail of pred, cyclo, mtx and others for these diseases. This doesn't mean you shouldn't see other specialists as needed. The very nature of wegs with its different body areas of attack means we see almost every doc there is and that is the way it should be. Your primary family doc knows you from before (mostly) and should continue be the primo care giver making appointment switch specialists, blood work and procedures as needed. Having a doc that is willing to learn is far better than one that doesn't care, having a doc that wants to use you as teaching tool is good too, how else can they come up with new treatment ideas if we don't want them to experiment? I would much rather go to a doc that is willing to grow with me in knowledge, than one that onlyndoesmwhat the rest tell him to do.