Recently Diagnosed

[mchughjj]

Does your treating rheumatologist consult with other hematologists who are recognized experts i this field? This is often and easiest way to get another view on what treatment or additional evaluation is needed.

The treating physician in my case is actually a pulmonologist (I'll explain), and yes, he is the curious sort in terms of seeking outside advice.

In early December, I visited the dentist...a scheduled cleaning coincided with a sudden breakout of nasty-looking strawberry gingivitis. The dentist was naturally stumped by what she saw but got me a same day appointment with an oral surgeon. The oral surgeon was equally bewildered, and I found myself surrounded by a gaggle of staff thumbing through various textbooks and speculating. Fortuitously, one such book had a photo that was a dead ringer of a match with the way my mouth looked. This photo was linked to WG. To the doctor's credit, after having read up on the potential seriousness of that condition, he stayed after hours to biopsy the gums on the spot. A couple days later I had a positive diagnosis. I then went to see my family doctor (he and the oral surgeon were already working on finding a suitable rheumatologist), and he decided to do some lab work and a chest X-ray. The chest X-ray came back showing something in my right lung that wasn't there six months earlier. (BTW, I had lung surgery on the right side as a child during a serious bout with suppurative pneumonia...a portion of that lung was removed) So, given my medical history and current condition as well as the lack of any local WG specialists, it was agreed to turn over my case to a pulmonologist. During my first visit, the pulmonologist was straightforward enough to suggest, although he'd start me on treatment, that I should see someone else outside of Greenville for a case review. After some homework, he recommended MUSC in Charleston. "Elephant" apparently didn't have a good experience there and moved on to the Cleveland Clinic. My initial visit to MUSC was positive (my medication plan was changed), but then again, I don't have any critical care concerns right now. In particular, my kidneys haven't shown a thing with the frequent lab work I've been subjected to. Eyes and ears remain fine, and the "stuff" showing up in my lung is virtually gone, I'm told.

[elephant]

Mchughjj, When I started at MUSC the rhuematologist said I had limited WG only in the sinuses, but it actually was attacking my blood vessels, eyes, ears, nose, Maxiallary, I had joint pain, short ness of breath on/off....then about 7 months after being diagnosed I developed a lung nodule and had surgery. I really recommend you see a local Rheumy like I do in Greenville,SC and then get to a WG specialist. I waited a year to see one, and wished I seen one sooner.

[Kathie28]

Thanks for all of the comments. I am a school psychologist in an elementary and middle school. I am a little less exposed to things than a teacher since I usually work with kids one on one. At least if I can tell they are sick ahead of time I can choose not to work with them that day. I feel like I am becomming a hand sanitizer freak though. I am constantly washing my hands. I have come down with 2 bugs since starting the pred a month ago. However, I seem to be catching everything from my own family. And one thing is for sure when I caught a stomach bug I was the sickest I had ever been. I wound up in the ER for hours trying to get the bug under control. I actually live in Charleston where MUSC is located. Another individual that works with me at my middle school was diagnosed with Wegner's last school year and she is going there for treatment. There seems to be good things and bad things about it there for her. They did wind of sending her to see a specialist in NY because they could not tell if she was in remission or not. My rhumey does consult with specialists and so far I feel like she is doing a good job but I am thinking of traveling to a clinic this summer just to make sure I am on the right plan. Has anyone ever went to a doctor where they run tests and look for tonxins in your body to try and figure out why your immune system changed. I can't help but be puzzled by the fact that of the few cases that exhist that me an other individual whose office was 2 doors down from have come down with this disease.

[mchughjj]

Mchughjj, When I started at MUSC the rhuematologist said I had limited WG only in the sinuses, but it actually was attacking my blood vessels, eyes, ears, nose, Maxiallary, I had joint pain, short ness of breath on/off....then about 7 months after being diagnosed I developed a lung nodule and had surgery. I really recommend you see a local Rheumy like I do in Greenville,SC and then get to a WG specialist. I waited a year to see one, and wished I seen one sooner.

Thanks for your input, and I hope your condition is currently in control. I understand your point about getting the most expert opinion possible, and I will maintain a very fast trigger to do so. I'm a little puzzled though about the benefit of seeing a local rheumatologist. That's easy enough to arrange, but I don't see the benefit at this point. Can you clarify?

John

[mchughjj]

Kathie,

It strikes me as unusual as well (two cases so close in proximity). The skeptic in me needs to ask: what was the basis of the WG diagnosis from the rheumatologist?

John

[elephant]

John, I see my local Rheumy every 6 weeks. I see Dr Carol Langford once a year at the Cleveland Clinic. If something were to happen my local Rheumy would call Dr Langford and discuss my case. Since I go up there once a year my WG specialist know me and is able to give more input on my situation.

[Sangye]

Kathie, yes that is strange. I know of a teacher who got Wegs after her school tore out the asbestos. Apparently the connection was so easy to prove that she got Workers Comp. I suggest you find out if any repairs have been made, etc...

One thing you can do with the kiddos is ask them to use the hand sanitizer right before they come in. And if you use toys for therapy, clean them every day with sanitizing wipes. Give the doorknobs a wipe throughout the day, too.

[drz]

Kathie, yes that is strange. I know of a teacher who got Wegs after her school tore out the asbestos. Apparently the connection was so easy to prove that she got Workers Comp. I suggest you find out if any repairs have been made, etc...

One thing you can do with the kiddos is ask them to use the hand sanitizer right before they come in. And if you use toys for therapy, clean them every day with sanitizing wipes. Give the doorknobs a wipe throughout the day, too.

I never heard of the asbestos and Wegener's disease connection. I worked in an old building and two of us (maybe three out of couple hundred employees) were diagnosed with Wegener's disease. That seemed strange when they estimate 33-50 cases per million is normal for USA. There were also a half dozen cases of MS and lots of cancer. MS is twenty times more common than Wegener's disease but still a rather rare autoimmune disorder too.

Our old building had lots of asbestos removal, mold, and a garbage burner on campus that yielded lots of exhaust. I had always thought it was the garbage burner toxins that created our health issues, but maybe it was the asbestos or the combination of both.