Second Opinion

[Christine O]

Hi. I am new to the site and may be jumping the gun but you all seem like a good group of people and a non-medical opinion would be appreciated. My 20 year old daughter has been having joint pain,fatigue, nosebleeds, and constant runny nose among other issues for years. Her pediatric Rheumy said maybe fibro or spondyloarthropathy. She hasn't been on any meds for the past 5 years so it isn't degenerative as far as the joints go. Summer of 2017 she had a really bad sinus/double ear infection and in November she was coughing up blood. They couldn't find a reason for it. Fast forward to Oct 2018. Another sinus infection and the urgent care doc found a hole in her septum. This is my concern. The ENT said that you don't just get a hole in your septum and none of the usual reasons applied to her. He referred her to a Rheumatologist to check for Wegners or Lupus. All the blood work came back normal and so did the chest x-ray. The Rheumy said nothing is wrong but nobody can explain the hole in her septum or other symptoms. I was not really comfortable with that doctor. So, should she get a second opinion. Or am I just being an over concerned mom? Be honest. Thanks so much!

[Dirty Don]

As you should be a concerned mom...seems the doc is ignoring or not knowledgeable enough to recognize obvious concerns. You don't even know if the doc ordered the right tests. Don't know where you're at, but I'd be looking for another rheumy soon. Best to you & your daughter.

[Christine O]

Thanks for your kind words. I think we will get another opinion. We are from the Chicago area. I think there is a good doc at Northwestern. Anybody know of someone near Chicago they would like to suggest?

[annekat]

The ENT may have known more than the rheumatologist. He could have done a nasal biopsy quite easily, and the rheumy could have referred you back to him for that. Nasal biopsies aren't always conclusive, but mine was, and it would be worth a try. My ENT just went ahead and did one once he saw my saddle nose and a hole in the bony part of my septum. And yes, you should find another rheumy and make sure he or she has experience with WG. The symptoms you describe sound like classic WG/GPA. Being from the Chicago area, I'll bet someone here can make a recommendation.

Sent from my MotoE2(4G-LTE) using Tapatalk

[Pete]

There are some vasculitis docs in Chicago:
https://www.vasculitisfoundation.org/mcm_resources/medical-consultants/

[Masha]

Hi Christine,
You are not over concerned, you are rightfully concerned. I just messaged one of our members, John. I seem to remember he goes to Loyola in Chicago and Cleveland Clinic. I am nowhere near so can be of no help in that direction.
I can tell you I was never diagnosed for years. Had many unnecessary sinus surgeries. Was told with my Spondylitis to go to PT, and then told to have surgery. I did not.
From what I have learned Wegeners can be tricky to diagnose. If they are only going by C-Anca readings that can be deceiving. My Rheumatologist told me there are many things to take into consideration. Also, did they take a biopsy of her sinus? Absolutely necessary.
Pete gave you good advice about the vasculitis site. Yes, she should definitely have a second opinion, by someone experienced in treating this disease. Once you follow our site you will see we ask questions, assert ourselves and do not hesitate seeking fine medical care. I know that is easier said than done, but stick to what you know in your gut is true and follow that instinct.
Masha

[Pete]

Hi Christine,

If traveling to Cleveland is not out of the question, there are several great vasculitis docs at Cleveland Clinic. I see Dr Villa Forte there and she's awesome. I've also heard good things about Dr Langford.

Getting to the Clinic from Chicago would involve flying to Cleveland where you can take the Rapid Transit train (similar to Chicago's Blue and Orange lines) to within walking distance of the Clinic. There are two hotels on/near the Clinic campus. There are numerous restaurants in Little Italy, just a short distance away.

[Christine O]

I followed your link and found someone that specializes in vasculitis. Am waiting to hear back on getting an appt. I will ask if she has specific experience with Wegners. I think she does. Thanks for the link!

[Christine O]

Hi Masha,
Sent a request for an appt with a doctor from the link Pete sent. When we see her I will ask for a sinus biopsy if they don't suggest it. She seems to have experience with Wegners but I will confirm it when they call back. Thanks so much!

[Masha]

Christine, I just heard back from John. He goes to Clevend Clinic. But he said if he was looking for a local doctor he would go to Northwestern, Dr. Amy Archer
Masha

[Christine O]

Masha,
Great. That was the name I found when doing some research too. Hopefully it won't take to long to get an appt. Just waiting to hear back from them.

[Alias]

You are relatively close to both Rochester (Mayo) and Cleveland, if there is not a qualified specialist closer to you.

Based on my personal experience, I would think twice about the nasal biopsy; it is an invasive procedure and can cause permanent harm, as it did in my case. If the serology is convincing for vasculitis, there may be no need for it.

Both of the physicians Pete mentions are highly respected specialists in GPA.

Best wishes

[seied]

I would also recommend to convey a sense of urgency because your daughter needs see the Weg specialist within a week instead of several months, these doctors are very few and tend to have long waiting lists.

[gilders]

Hope you get an appointment and some answers soon. It very much sounds like Wegener's, but even if it's not, you need to get to the bottom of it.
Keep us updated with how you get on.

[Alysia]

Welcome to the family, Christine. I am glad you are going for a second opinion with a vasculitis expert.

It sounds like wg symptoms. Wg can be smoldering for years while one can have normal labs. But the symptoms are there, and it should be treated.

Also, I agree with Tom about avoiding the nose biopsy: I had it twice and it turned out negative. False negative. But docs considered it and delayed a serious treatment for my wg until the bridge of my nose collapsed and I developped a saddle nose.

A real WG expert will know to diagnose it, even when the labs are ok. Make a list of all the symptoms and if there are anything else which might be related. For example, I had gums bleedings and rash which were wg related.

Sending prayers to your daughter and you. Please update us.

[[email protected]]

This is a huge problem - dealing with medical professionals who know nothing about vasculitis. More common than I care to belabor! I'm so sorry your daughter is sick - not easy! Just because she has a negative ANCA "the blood work came back normal" doesn't mean she doesn't have vascultitis. Yes, 90% or so of Wegener's patients have a positive ANCA - but about 10& don't. Also there is an ANCA related vasculitis previously known as Churg-Strauss and now called Eosinophilic Granulomatosis with Polyangiitis (EGPA) in which about 60% of patients don't have a positive ANCA. EGPA can be quite similar to Wegener's. Sometimes eosinophilia gets overlooked and blamed on allergies. In EGPA eosinophilia in peripheral blood is very high. Also there is Polyarteritis Nodosa - also ANCA negative and it too can cause many of the same identical symptoms. Chest X-rays are notoriously unreliable at detecting early or mild lung involvement. A CT scan is required to detect significant changes such as infiltrates, nodules and the like. The top advice out there for those who think a vasculitis diagnosis is possible is to make an appointment with a vasculitis specialist at a vasculitis center. Perhaps contact the Vasculitis Foundation (http://www.vasculitisfoundation.com) to see recommended centers. Query the forum if you need recommendations near you. Best of luck on receiving a speedy diagnosis for your daughter.

[RiverJoy]

Hi Christine,
I hope you were able to get an appointment for a second opinion. When my health started snowballing, after being in the hospital for two weeks they wanted to remove part of my lung, as they couldn't diagnose me and wanted to remove the legions in my lungs. I told them no and asked to be transferred to one of the larger hospitals in Boston. The Boston hospital was able to diagnose me after another week. So yes, a second opinion is wise! And as others stated Wegeners can be very difficult to diagnose. The doctors try their best, but not everyone knows everything. My first anca test came back negative and they never found anything definitive from the two lung biopsies they did. Praying for answers and healing for your daughter!