refreshing

[Nancy-S]

Needing to see an ENT again, I spent the day looking. Tired of wasted time and copays, I called a few offices and asked their staff to ask the doc if they'd be willing to look outside the box with a poss wgs patient. Not surprising, few said no.

And then I called one today. I found him online because his website touched on wgs. His office staff didn't just make my appointment, she interviewed me. She got all my drs names to request my records. When I warned her everything looks good, her reply was "If were dealing with blood vessels its more complicated then seeing you once and telling you, you're okay". I cried a little when she said that.

I know its premature. However, in my world this was a HUGE step forward. Hope.

[Jaha]

Way to go NancyS, it took me a long time to be confirmed and I hope you get some answers now. Best of luck to you!
Jana:smile1:

[annekat]

Yes, Nancy, I also hope that this is a big breakthrough for you.

Anne

[Geoff]

Looks like a big reassuring arm reached out to you Nancy. I hope this goes well for you.

[Sangye]

That's great progress, Nancy. I'm glad you're being persistent.

[KathyB]

Wonderful, Nancy! I have my first ENT appt next week on a referral from my rheumy. Apparently, he doesn't take new patients but was willing to start with me! I've been blessed with fabulous doctors so far and thank them for their tender, expert care!! (I hope to always be able to say this!)

KB

[Nancy-S]

Thanks guys. I'm persistent with your help. I mean, I'm pretty demanding (in a kind way) but had it not been for your info I wouldn't know what to ask for/expect/research.

Even better, I went to my hometown rheumy yesterday. I tried a different approach with him. I dragged my exhausted rear over there, and didn't try to be polite. I took a nap on the exam bed while waiting for him, slouched, stared into space from fatigue, and sat silently as he read my file. I had planned on crying, but didn't have it in me, I was too tired. In a statement he referred to me as a wegs patient.

I don't take that as a dx, but he acknowledged my situation. He just read that 40% of wg patients that have clean xrays have abnormal mri (lungs). He also was sad to hear how the eye doc behaved.

It was my birthday, and that visit was a nice gift. Progress. Yay.

[Trudy]

Happy belated Birthday Nancy!!!!:biggrin1:

[annekat]

I don't take that as a dx, but he acknowledged my situation. He just read that 40% of wg patients that have clean xrays have abnormal mri (lungs). He also was sad to hear how the eye doc behaved.

It was my birthday, and that visit was a nice gift. Progress. Yay.

Happy Birthday, Nancy! I'm glad you got some progress as a gift.

As for the lung xray issue, in my case, I almost had a "clean" xray, but then my pulmonologist took a second look and saw something a bit suspicious. That's when he put me in the adjoining hospital overnight for tests. He wasn't suspecting Wegener's but endocarditis, and wanted to do some blood cultures along with a CT scan. The CT scan revealed numerous cavitary lesions which the overseeing internist interpreted as a possible indication of Wegener's. I got in to my ENT a few days later for a septum biopsy which provided the diagnosis. (I had just discovered my saddle nose, and probably had it in the hospital, but no one noticed! My glasses hide it pretty well.)

Anne

[Al]

It was my birthday, and that visit was a nice gift. Progress. Yay.
Happy birthday, indeed, Nancy--nice gift!

Al

[Lightwarrior]

I know its premature. However, in my world this was a HUGE step forward. Hope.

This is HUGE Nancy :w00t::w00t: I felt like I was on death's door and when my Pulmonologist, colleague and friend took my hands with tears in his eyes and told me we finally had a diagnosis and that the dx was Wegener's , I hugged him and said thank you. He told me, Christi this is the worst possible dx, it is not something to be happy about. None of my medical friends understood that not knowing was such a burden. Once you know, you can start dealing with it. So I understand Nancy as do the rest of this forum will.

[Nancy-S]

Thank you for the bday wishes. Christi, your story is touching, so very real and all too familiar. Thank you for sharing.

[Dirty Don]

Happy Birthday Fighter!!!

[Dryhill]

Happy Birthday Nancy, sounds like it was a really good day.

Jim

[Sangye]

Happy Birthday, Nancy!! We understand why it was such a good one for you.

I've had chest x-rays that look only mildly off, but the CT looks horrendous. (I'm assuming your rheumy knows not to do an MRI for lung issues as you said. CT is the imaging of choice for lungs.)

[annekat]

That's good info, Sangye, about CT scans being better than MRI for lungs. And Nancy, without remembering everything you've shared so far, I'm sort of wondering why you haven't had one if lung issues are suspected.

It's sad that we're all hoping you get a diagnosis of WG soon, but we don't know what else to hope for, and that way, you could start getting proper treatment! In my case, the diagnosis was a blessing and things have gone pretty well since, and I'd certainly wish the same for you.

Anne

[Nancy-S]

It's sad that we're all hoping you get a diagnosis of WG soon, but we don't know what else to hope for, and that way, you could start getting proper treatment! In my case, the diagnosis was a blessing and things have gone pretty well since, and I'd certainly wish the same for you.

Anne

It's a little like Lightwarrior's said. This is one of the worst dx to have. But having the illness without dx (and treatment) is even worse. So even though it may seem as though we are wishing for something bad, the truth is exactly the opposite. Thank you!

[Nancy-S]

Happy Birthday, Nancy!! We understand why it was such a good one for you.

I've had chest x-rays that look only mildly off, but the CT looks horrendous. (I'm assuming your rheumy knows not to do an MRI for lung issues as you said. CT is the imaging of choice for lungs.)

Thanks Sangye! He did say MRI, but when I mentioned just "adding" the order to my scheduled MRI (brain) next week, he said it wouldn't work because it's a different machine. Maybe he was thinking CT? Right now, he's ordering the xrays from November and we'll move forward. It feels good to move forward!

[Nancy-S]

Happy Birthday Fighter!!! Thanks D.! I hope you're right....

[Sangye]

Thanks Sangye! He did say MRI, but when I mentioned just "adding" the order to my scheduled MRI (brain) next week, he said it wouldn't work because it's a different machine. Maybe he was thinking CT? Right now, he's ordering the xrays from November and we'll move forward. It feels good to move forward!
Yeah, he must have meant CT. Unless you're definitely going to be sedated, I don't recommend doing more than one MRI at a time. They are very long. Each one can be about 45 mins. I once had a full spine MRI done (cervical, thoracic and lumbar, all separate studies). I was in the tube for a couple hours. I could barely move once it was over. Hugely painful.

[KathyB]

Happy birthday, Nancy! It sounds like your gift was a diagnosis -- a great gift indeed regardless of the nature of the disease. KNOWING is everything. I remember having a good cry when they confirmed WG. It was all about relief then beginning a treatment plan. (I thought I was going crazy for sure!)

KB

[Nancy-S]

Thanks Kathy. Your so right, knowing is everything. As Don said, I'll be able to see the enemy. With that my attitude changes. When my attitude is in check, I can move forward.

I have a question. The new ENT appointment is this week. Timing couldn't be better as I've developed sores in one nostril (why are all my ENT issues only on the right side? Wierd. But thats not my question, lol). What do you use for head pain? Headache, ear pain. Sore throat. Nose sores.

I stopped tramadol after taking it over a year. I use vicodin as needed but want to use caution with this one. I have yet to find over the counter meds that work.

[Dirty Don]

Peering around my dusty room,
Sweeping away granules with a medicated broom...
I can visualize the enemy now so clear
Something I no longer fear...
I know it's time to move along,
And join the madding throng
Once again pushing back the deadline of my tomb. YIKES!! Who said that!! LOL

[pberggren1]

Ur 2 funny Don........lol.

[Nancy-S]

Something I no longer fear...
I know it's time to move along,
L

I'm clinging to this, Don. I needed that.