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DRYQN35
11-04-2018, 10:12 AM
Hi all, just moved to Atlanta and may or may not have Wegener's (I was diagnosed, then I went to the Vasculitis Clinic at UCLA, where the experienced director admitted mine was a tough case to figure out, but wanted to keep a close eye on it with frequent bloodwork).

I've seen some older posts asking about Atlanta doctors with either Wegener's expertise or who are willing to work with an out-of-town Wegener's dr. But I didn't see any resolution, so I was hoping for some fresh ideas?

(By the way, Dr. Waltuck is not taking new patients, Dr. Khasnis (recommended to me by my former doctor) doesn't seem to have an active profile anywhere. Emory's Vasculitis Clinic may be fine, but the dr. there cut back my bloodwork significantly. I would prefer the frequent bloodwork since I do have minor autoimmune symptoms, and I'd prefer to nip a flare in the bud.)

Thank you in advance for any suggestions!

Pete
11-04-2018, 12:07 PM
Did the Emory doctor explain why your lab frequency was being reduced? You may have to push for more frequent lab orders. Other than that, how well do you like this doc?

DRYQN35
11-06-2018, 11:09 AM
I think his rationale was that he didn't observe anything on clinical exam that was abnormal, and previous imaging of sinuses and lungs was normal, so I can't have Wegener's absent the classic clinical expression--he said some people just have high antibodies and never develop the disease. He said when you have Wegener's, the symptoms are not subtle and unlike anything you've ever experienced (i.e., you have a flare). He hypothesized celiac instead but since I'm already gluten-free, there would be nothing to do on that front.

Alysia
11-07-2018, 01:42 AM
I think his rationale was that he didn't observe anything on clinical exam that was abnormal, and previous imaging of sinuses and lungs was normal, so I can't have Wegener's absent the classic clinical expression--he said some people just have high antibodies and never develop the disease. He said when you have Wegener's, the symptoms are not subtle and unlike anything you've ever experienced (i.e., you have a flare). He hypothesized celiac instead but since I'm already gluten-free, there would be nothing to do on that front.

WG symptoms can be subtle for years. Mine were. Until my first BIG flare. All those years I was accused of being hypochondriac and of having psychosomatic symptoms.
I suggest you to open here a new thread, tell about your symptoms and see what others think.

Pete
11-07-2018, 03:47 AM
I think his rationale was that he didn't observe anything on clinical exam that was abnormal, and previous imaging of sinuses and lungs was normal, so I can't have Wegener's absent the classic clinical expression--he said some people just have high antibodies and never develop the disease. He said when you have Wegener's, the symptoms are not subtle and unlike anything you've ever experienced (i.e., you have a flare). He hypothesized celiac instead but since I'm already gluten-free, there would be nothing to do on that front.

OK, I guess. Here’s another thought for you - an allergy. For example, BookNut is allergic to grains. She doesn’t have celiac. She uses potato flour and nut flour as grain substitutes. She is also very careful about meds because some have grain in them or use grain-based dyes. When she does eat grain, she breaks out in hives and has breathing issues.

What medications are you taking? Are they working well for you?

Is your doc willing to consult with a Vasculitis expert?

Good luck...

BookNut
11-07-2018, 09:29 AM
Hi! I too was misdiagnosed with wegeners. I found this group and they continue to be my friends. I tried gluten free and it was not helpful because it turned out I am allergic to ALL grains. I never had problems eating grains until I retired. Then I developed severe sinus issues and asthma. After 4 years of specialists, three hospitalizations and a kung capacity of 32%, my gp said to me, ?you have tried everything else, lets try an elimination diet?. I ate only meat and low carb veggies and berries for about three weeks. I added back dairy with no trouble. But I felt better so I did NOT add any grains. Once I ate a christmas cookie and got a rash from head to toe. Same with rice. I am never tempted to cheat now. My lung capacity has gone back to 100%. I still cough because four years of being ill with sinus issues ended me up with permanent lung damage called bronchiectasis. It is mild fortunately, but it will probably not get wirse unless I go off the wagon. If you want to try it, you might find the links on this page to be useful.
http://wanderings.edublogs.org/healthy-eating/

Tim wga
11-08-2018, 07:31 AM
Please keep me informed if you find a doctor in Atlanta with experience with wg.
I am going on 3 years.
I see a KAISER rheumatologist.
But I think I am the only one he sees with WG.




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