Hello

[SeaSprite]

Hi, I have been reading through your forums all day today and yesterday. I don't officially have WG, but I was diagnosed with Subglottic Stenosis last week. So, they want to do a biopsy on it sometime soon... so, of course I got on Google, which I know is always a mistake. I have healthcare providers that are part of a system that posts your test results online as soon as they are available... so I had read my results over and over for 2 days before I finally got a call from the ENT (chest and neck CT). And being a health educator, it is always worst case scenario in my mind (I sometimes wonder if a career change may make me less apt to panic when it comes to health issues). Anyway, the reason I am worried about WG is not just because of the stenosis, but also that there was a lung nodule on the CT scan. The radiologist wrote that it is a 12mm calcified nodule consistent with prior granulomatous infection. Also, I was looking at a pathology report I had last October from a weird fleshy looking nodule on my arm, and it mentions that it could be a granuloma annulare and can't rule out granulomatous infection based on the sample. And of course I start thinking of things that I have had recently, like a mildly sore hip that just feels out of joint and a weird rash on the same hip that is kind of dry and gets worse when I scratch it or take a hot shower. But coconut oil does seem to help. And the problem is I have no idea if any of these things could even be related to WG. It has been 5 days since my CT scans, which isn't a terrible lot of time, but my brain is going a million miles a minute. So, I thought I would post here to see what you lovely folks might have to say about it. Glad to be here and to meet you all.

[vdub]

Hard to say if you're a wegs candidate. The diagnosis is often made by ruling out everything else. I think most of us will tell you that "crushing fatigue" is one of the most common symptoms. Let's hope you don't have it. :-)

[SeaSprite]

Thank you vdub, I hope not too, but if I do, I am glad to have found this little community. You all seem like such a great support to one another!

[annekat]

Welcome, SeaSprite! I love your username. On the subject of googling: sure, it can be a negative thing to do too much of it, can lead you into all sorts of dark alleyways and conflicting or erroneous information. But what else can we do, sometimes? It is a great source of information and we just have to learn to weed out the stuff that seems overly sensational, over simplified, whatever, and find sites we can trust such as Mayo, Johns Hopkings, even WebMed, Medscape.... I'm sure you've seen them all, and it's like going to the library, only easier; you are going to have to sift through a lot of stuff. What really stands out in my mind right now is that I never would have found this forum without Google, and without this forum, I would be lost. I indeed had read all about WG before knowing I had it and knew what a saddle nose was before I noticed one on my face. (No, we don't all get them.)

I hope you don't have Wegener's. But if you do, take heart, it is not the end of the world. It is true that the crushing fatigue will kick in eventually if you do have it, but it took awhile for it to get to that level for me. Everyone is different in their WG experience. You are right to pursue the avenues you are in getting to the bottom of your symptoms. It is true that they could be something else entirely. I hope you'll continue to follow the forum as long as you feel the need. Good luck, and let us know what happens!

[lag713]

I sincerely hope that you do not have Wegener's. The process of going to the worst case scenario is called "catastrophizing". Here is some advice for battling catastrophizing given your job as a health educator - What is Catastrophizing? | Psych Central (http://psychcentral.com/lib/what-is-catastrophizing/0001276). It takes concerted effort but it will help.

I concur with Vdub that Wegener's is often diagnosed by ruling everything else out. Waiting for results and feedback from the doctors is always the worst part of the process of getting a diagnosis. I hope they find out what is going on soon. If you do have Wegener's then I recommend Dr. Robert Lebovics in NYC because he has a lot of expertise with Wegener's and tracheal stenosis.