Still Waiting Diagnosis Confirmation

[witzend2]

Hi all, this is the first time Im posting to this group. Im still waiting (since Feb 09) for an actual diagnosis. After excrutiating abdominal pains and fever that wouldnt go away i brought myself to the ER. I was admitted for 10 days with no true diagnosis. I was on disability and back and forth to doctors with such varied symptoms such as fever (that never goes away, but is constantly low grade), the abdominal pain, weight gain, burning eyes, migranes and sinus problems (drs just said it was allergies though nothing helped), lethargy, shortness of breath, weakness, just no energy, night sweats and the list goes on.

In april I was diagnosed with Graves Disease (another auto-immune disease) whose symptoms mirror WG. Still experiencing the FUO (fever of unknown origin) I was again admitted to the hospital again in June where they repeated a CT Abdomen. This time, the drs found something strange by fluke in my lungs. They followed that up with a CT Chest and confirmed reticular-nodular granuloma (or as they called it connect the dots in laymens terms). I went to a pulmonologist who did a Bronchoscopy and blood work. After waiting for abt 4 wks for the reuslts of that culture I went into his office and he told me I have a Positive C-Anca which points to Limited WG (no kidneys problems thus far).

Last week I had the Open Lung Biopsy done. Still waiting for results on that. Seems the hospital I had it done at said its intestitial lung disease and my drs had the sample sent to Johns Hopkins for more thorough testing. He didnt believe the hospitals findings and felt it would be best to send the sample to the experts. I had some complications from the open lung biopsy, no have a low pulse-ox, came home after a week in the hospital on oxygen as a result. I dont want this to be the confirmed disease, but its better than not being treated for anything. From what I understand this is whats causing all my problems. Some joint pain, heart palpatations, etc. Im just hoping for the diagnosis to be confirmed now so I can get started on treatment before it progresses any further.

Sorry for being so long winded, its just that Ive been sick since Feb and it feels like a diagnosis will never come. Those closest to me seem to think Im making it up and milking it all cuz they say I look fine. This is hard enough to handle let alone when when no one believes Im even sick, well that was until the lung biopsy. Everything kept coming back normal like white cell count etc. Now the CTs done in early June at least proved its not my imagination.

Im hoping this group brings me the support Im definately not getting from those that are supposed to care.

Oh almost forgot.. my name is Marcy and I live NJ down the shore in northern Ocean County. If anyone knows of a rheumalotogist with experience treating WG in my area please share.

[Doug]

I hope you get a firm diagnosis, too. The information you note does point to WG. There are times you won't look ill, and may even be basically "normal". WG is for life, and for life you will be more susceptable to infections, the possibility of flares, the problems that come from medications. Welcome to the forum, though, and feel good that Johns Hopkins will be involved in your case because it ranks in the top tire of institutions caring for weggies!

[crackers]

hi marcy.looking well and feeling the exact opposite is one of the more frustrating aspects of this disease.i'm sorry you're not getting the support you need from those around you as this was so important to me when i first started with WG.as one who never had sick leave in 20 years and never complained when i had flu or a cold they took it seriously when i started feeling ill.it was my wife who literally dragged me to the doctors at the outset.hopefully you will get a diagnosis quickly and get the treatment you need to start feeling better.a few years ago an animal charity here in the uk ran a campaign to stop people giving pups as gifts at christmas only for them to be abandoned later as the novelty wore off.the slogan was "a dog is for life not just for christmas".the same sentiment applies to WG.those around you need to understand this.
john.

[Sangye]

Hi Marcy,
I'm happy you found our group!

Waiting 4 weeks to say your ANCA was (+) is ridiculous. The test takes 4 DAYS to come back. Same for blood cultures. I'm very glad they sent your path samples to JHU. Hopefully you'll get a firm diagnosis one way or the other. If you do need a rheumy on board, please consider either traveling to JHU or at a minimum getting a VF doc to consult with a local rheumy. I think right now you have to wait for a diagnosis from JH to know how to proceed.

We all understand the "I don't want it to be Wegs, but I so want a diagnosis," and the "You don't look sick" part!!! With Wegs you can be near-death and still look pretty normal. When I was in JHU hospital last month, even the regular rheumys said it couldn't be a Wegs flare because I "looked too good." My Wegs specialist there groaned when he heard that. Only Weggies and Wegs specialists really know.

[Jack]

During my first stay in hospital following diagnosis I soon felt that I was the fittest person on the ward. Not really understanding anything about the disease, I could not figure out why they would not allow me to go home.
I now know that my body was falling apart on the inside and it was only the drugs that were keeping me upright!

[witzend2]

Thanks to all for the warm welcome. Sangye, let me clarify... I knew they took blood when the bronchoscopy was scheduled. The doctor waited 4 weeks for the culture to grow b4 having me back in the office cause the biopsy from the bronchoscopy showed nothing. Thats when he explained the (+) C-ANCA. I had never heard of and ANCA before, so Im guessing he was skeptical enuf to run the test.

I would willingly travel to JHU but it seems that my insurance doesnt cover doctors in Maryland. I started checking yesterday afterf reading other threads here that mention the names of some doctors. Im gonna have to call the ins company for confirmation on that though. You mentioned a VF doc.. not sure what you mean, please clarify.

What scares me is I have had frequent fevers for quite a while, long before Feb and now Im wondering if its related at all. Also have had freqent sinus infections over the years. Maybe its all just a coincidence.

Im no longer waiting on my dr though to tell me whats going on, I took it upon myself yesterday to call JHU and make sure they have my samples and maybe get an answer from them, but I doubt they will give it to me. At least this way I'll know when to start calling my dr.

[Sangye]

Wow, Marcy, I'm so proud of you for taking this into your own hands. Very important and very difficult to get someone to do! They probably won't tell you the result, but they must tell you if it's been sent to your doc, etc....

Thank you for clarifying the delay in your ANCA result. I'll stop wagging my finger at your doc now.

Your frequent sinus infections and fever sure sounds like classic Wegs, now having progressed into your lungs. You are right to take this seriously and hit the ground running.

VF is Vasculitis Foundation. There are many vasculitis specialists who consult with local docs and guide patient care. They never charge for it, so insurance doesn't need to be involved. Many people travel to a large center like JH for initial diagnosis/ treatment plan and return maybe once a year for follow-up. That doc works with their local doc the rest of the time to carry out the recommended treatment.

If insurance coverage is a problem and you get a dx like Wegs, you can ask your local doc to write an appeal that you need to be seen by a Wegs specialist, not just a rheumy.

[witzend2]

I feel like this has been going on since the beginning of June and that CT Scan that showed a lung abnormality. The end of June was the bronchoscopy, 4 wks to see if anything grew from the culture, the ANCA findings... the wait for the open lung biopsy and now 2 weeks later and still waiting so almost 3 months to diagnose since finding the lung abnormalities. Seems too much. At least my pulmonologist knew to check for Wegs. I guess I have to give him some credit. There dont seem to be many rheumy's here that are in my insurance, but I'll have to keep searching and call the ins. company abt a specialist visit at JHU. I figure if I dont push these ppl (drs, pathologists, etc) no one will.

[Sangye]

I figure if I dont push these ppl (drs, pathologists, etc) no one will.

You're absolutely right. No one will take your health as seriously as you do. Even the best doctors have many other patients to care for with limited time, so days turn into weeks and months.

[Luce]

I too was the same as Jack - in hospital I was originally put on an acute lung ward and my fellow patients were all ladies who had all seen at least their 60th birthday, some quite a few more.
I felt so well, except for a cough and flu-like symptoms that I felt like a bit of a fraud and would look after the others by making cups of tea, refilling water jugs and plumping up pillows.

Seems so silly now that I was busying myself while my lungs and kidneys were silently packing up, but that's the Wegs effect for you.