Diagnosis Help Needed

[Sherrie DiSalvio]

Hi Everyone --

I need you help and information, please. I have not yet been diagnosed with WG, however I have so many syptoms and my doctors seem to be draging their feet.

Last year I was diagnosed with Subglotic Trachel Stenosis with an 80% inclusion. I have had two laser surgeries and on Tuesday will be seeing a new specialist at UCI in CA. I had two biopsys along with my two surgeries and both were negative for WG, however I have a positive blood testfor WG, 3 nodules in my lungs, extreme shortness of breath, cronic painful coughing (no blood), sinus problems and this week I have develped a skin rash on my chest, arms and legs that is very itchy and red, along with sever GERD. All of these symptoms occured after major back surgery to correct an unstable L4 and L5 issue, I assume this was the trigger.

Please tell me if anyone out there had multiple symptoms for a long time with no confirmed diagnosis. I feel as if I am loosing time for treatment and I feel worse each day. I am still working but by days end I am very fatigued.

Both my husband and I feel like I do have WG and just need to find the most knowledage docotor for the diagnosis.

Thanks for your help.

[pberggren1]

Hi Sherrie:

So why do you and your husband think it is Wegs?

Was the blood test for Wegs ANCA? And if so which one was elevated, C or P, and what was the value?

Did you have a CT scan or x-ray of your lungs to determine the nodules? How big are they and are they cavitating? Where are they located?

Describe your sinus problems in more detail.


There are others that will weigh in on this one as well that may have more insight than I. The negative biopsies sound strange.

God Bless,
Phil

[Sangye]

Sherrie, welcome to the group. Negative biopsies are not uncommon with Wegs. Some people have (-) biopsies for a short time, but others never have a (+) biopsy, even with obvious Wegs. Some people even have (-) blood work for Wegs.

It seems pretty clear that you have Wegs. In an odd way, you're lucky to have such "classic" signs/symptoms, which make it easier to diagnose it based on empirical evidence. I have no idea why your docs would drag their feet and avoid treatment. You can't lose time with Wegs. It can do a lot of silent damage, and if it's untreated it puts you at high risk for other complications. Also, the more active it becomes, the more likely you'll wind up on harsher drugs and higher dosages.

As far as what to do, you need to get to a Wegs specialist asap. Call the VF and ask for the nearest Wegs specialist. I believe it's UCLA, but you might have to go to San Francisco. I got my Bachelor's and teaching degrees from UCI-- great school, but they're not the best to treat Wegs. You need docs who know it well. You also need a highly experienced Wegs doc to do further surgeries on your subglottis. Don't believe your docs if they say you can wait.

[jola57]

Sherrie, welcome. If you are able please do go to a specialist for the diagnosis. Only they are able to fully look at your history and blood results and make an informed diagnosis.

[Jack]

Hi Sherrie,

Unfortunately Wegener's is a very difficult disease to pin a positive diagnosis on and the only 100% indicator is a +ve biopsy result. Trouble is, a -ve result does not rule it out. Because of these problems, diagnosis should be made using the BVAS system. This looks at all the symptoms together and gives them a score depending on their association with Wegener's. From your description, this test would confirm the diagnosis in your case.

I had 18 months of multiple symptoms before being diagnosed and this is by no means uncommon. Just read any of the stories on this site. However, the disease does not hang around waiting for the doctors and in my case it cost me my kidneys. You need to press for some action and having a vasculitis specialist would be a good place to start.

[elephant]

As I was reading your symptoms...it does sound like Wegeners, but you really need to see a Rhuematologist that specializes in Wegeners Disease. I have a ton of damage because it took so long to get treatment and was misdiagnosed but given medicine that stopped the disease process. I drive 10 hours to go to Cleveland Clinic in Ohio to see my wegeners doctor. Wish you the best and keep us updated.

[JanW]

I too have subglottic stenosis and for five years was misdiagnosed as asthma. It happens to be a classic symptom of WG, however, it is also a symptom of sarcoidosis (with a slight variation in where it presents in the windpipe. If you c-ANCA is positive it's about an 80% likelihood that you have WG. You also need to be REALLY careful about having surgery in this area with a laser -- there is defiinitely a risk profile to this that isn't favorable over the long term. I believe that Cedars-Sinai is going to become a new vasculitis specialty center according to what I learned at the symposium...I definitely would recommend you going over to there.

[drz]

As I was reading your symptoms...it does sound like Wegeners, but you really need to see a Rhuematologist that specializes in Wegeners Disease. I have a ton of damage because it took so long to get treatment and was misdiagnosed but given medicine that stopped the disease process. I drive 10 hours to go to Cleveland Clinic in Ohio to see my wegeners doctor. Wish you the best and keep us updated.

How long does trip take? Do you have enough energy to make it in one day. For me that would take three days or more. Is flying an option?

[elephant]

My husband and I have family come down and watch our kids and it takes about 2 days. It is really hard to travel 10 hrs one way, so we have to break it up.

[drz]

My husband and I have family come down and watch our kids and it takes about 2 days. It is really hard to travel 10 hrs one way, so we have to break it up.

I was wondering if you had some secret if you could handle that long of trip in one day. Wegener's seems to make almost everything harder due to low endurance and fatigue.