Hello

[Maryte]

Hello everyone....
i am not sure if I belong here or not as I do not have a diagnosis, although I will be having a biopsy next month.

For years, I have had really bad bouts of pneumonia leaving scar tissue in my lower lung lobes. I have been hospitalized numerous times in the past because of this. With my last bout, I coughed up blood and my dr ordered a CT scan (without contrast). Two small nodules showed up with the bigger one being 7mm. This is the one they want to biopsy.

i have had other problems that include.....
Sinus problems
Bleeding problems
Anemia
A recent infection/inflammation of my right upper eyelid (infected sweat glands of the eye)
Chest pain with various arrythmias ( had a cardiac ablation done 3 years ago which stopped one)
Right renal stenosis
Chronic mouth sores
Joint pain, osteoporosis and more smaller complaints....

when I run these symptoms through the internet I come up with Wegner's and Sarcoidosis.

Am I jumping to conclusions here?

Any input would be most welcome...

thank you in advance, this looks like a great group of people here!

Mary :crying:

[marylz]

Hi Mary! Welcome to the forum. Unfortunately it sounds as though you may "belong." This is a great group and you may find answers to some of your questions as you await your diagnosis. Look forward to hearing more from you.

[drz]

No, anything that might help explain all those symptoms needs to be checked out. You certainly present many of the same symptoms that are noted in our discussions here. We hope you don't need to join our group but you will be most welcomed if you do. You don't mention any of the lab work that is often used to monitor our GPA or suggest the need for a biopsy. The biopsy should help clarify your situation.

[Dirty Don]

Welcome Mary...I ditto what drz said. Don't let anyone put you off in finding what you need to know, especially if it is a WG flare. Best to you.

[Maryte]

Thank you both!

I have blood work ordered that needs to be done before my next CT scan. Blood work first, then another CT scan and then the biopsy. The biopsy is for the larger nodule, the CT scan is to check the growth rate of the nodules.

thank you for the welcome... :smile1:

[Maryte]

Thanks Don,

Can a flare up settle down on its own without steroids?
this seems to be what happens to me........

Mary

[Dirty Don]

Can a flare up settle down on its own without steroids?
this seems to be what happens to me......

Yes, but without treatment, continued or immediate, the flaring will return, usually in a harsher form. Don't let it go...I both ignored and didn't recognize the symptoms, and nearly died.

[mishb]

Hi Mary,

I agree with what the others have said on here.
It does sound like you have WG, but there are also other vasculiitis and auto immune conditions that it could also be.
Either way, the medications/treatment are basically the same.

Have you started on any medications? If so, this will help with any possible "flares" whilst you aer waiting on the biopsy and diagnosis.


One other thing - you are correct, this IS a great group of people ..........actually, the people on here are AWESOME :thumbsup: (this must be my word for the day :lol: )

[Alysia]

Hi Mary,
welcome to the forum. If it turns out that you have WG, at least you will not be alone with it. your list sound like WG. the biopsy will tell. I hope you can find soon what it is, get the right treatment and feel better.

[annekat]

Welcome, Mary. I, too, had symptoms that came and went for a couple of years before having a big flare in my lungs, which got me diagnosed. I don't think I almost died, like Don, but I could have if it had progressed much longer without treatment. So it's good you are getting a biopsy; I wish it could be sooner. If things get really bad, you should go to the ER. If indeed you do have Wegs, you have found the best place in the world to be.... this forum! It and everyone on it are the greatest! Personally, I would be lost without it, and I'll bet many others would say the same. Best of luck in finding out what you have and getting treatment ASAP.

[Maryte]

I 'd like to thank EVERYONE for your welcome, words of advice and help. It feels wonderful when someone else understands what you are going through and the support is so comforting.

i have had, through the years, numerous tests trying to pin down the cause of my health issues (autoimmune) ? but no one has been able to tell me what it is. I have coughed up quite a bit of blood in the past bouts of pneumonia, but this time I had the CT scan which showed the nodules. Because of past issues with dye, I can't have the contrast so, the CT scan is limited. My family doctor wanted a biopsy ASAP but, the surgeon wanted blood work and the CT scan repeated 2 months after the first. He bases this on the nodules' size. Apparently nodules this size are difficult to biopsy and he is concerned that he wouldn't get a 100% definite answer. He is fairly sure it is not cancer because of the nodular distribution and I would not have the type of symptoms with them at this size. He says they are "granular" in nature. So, next month I will know what is what.

i am the one searching the internet with this information. I have tested negative to TB and any fungal/bacterial tests in the past, so I know it's not that. That seems to leave cancer ( not consistent, but not 100% ruled out) WG and sarcoidosis. There might be more reasons too that I am missing, but I am not sure. Until next month, I am only guessing. Both doctors say to wait, but it is hard!

The one thing that has me puzzled is how I have bounced back by myself. From everything I have read, this doesn't seem to fit. Anne and Michelle, thank you so much for your welcome and response. Anne, I know that you had symptoms that came and went too, but were they really severe back then before your diagnosis? How long were you like this for? What was different about the big flare? Severity or duration? Multiple organ involvement? Is this the norm?

I have been quite sick, but recovered, albeit slowly, by myself through the years. Is this typical?
I have had the IV antibiotic and support therapy but no steroids for years.

I know everyone's course is different but, does this make sense?

thank you everyone once again for your support,
Even if it doesn't turn out to be WG, it is still nice to have everyone here until I find out for sure. People with similar issues that understand!

Mary

[annekat]

Mary, even though everyone is different, there are enough similarities that it really helps to hear everyone's story. Many times I've read on here things that sound just like me, while reading other things that I didn't experience. There are some scenarios that a lot of us have gone through, such as sinus and ear involvement, and various degrees of lung involvement.

I probably had Wegs for about 2.5 years before dx. Most of the time it just seemed like recurring sinus infections, in conjunction with allergies, which a lot of the population has. I had a few joint pains thrown in here and there, too. There were only two times my symptoms were severe enough to cause alarm. The first was a sudden severe infection in both ears, which was resistant to antibiotics but finally killed off by a really strong one. I was sick for weeks after that... low energy, hearing loss, nasal discharge, etc. That should have been a clue to check me for Wegs, but since it is so rare, it was chalked up to a "really weird bug", which was never identified because a culture attempt was unsuccessful. After that I went along for 2.5 years just being treated for allergies and sinus infections, and everything did get worse during typical allergy seasons, so it made sense. Then, the second severe period was in winter of 2011 when I started having a lot of coughing and asthma-like symptoms along with the nasal stuff, which progressed over a few weeks until I thought I might have pneumonia and saw the pulmonologist I'd seen for asthma in the past. He was even skeptical that I had anything out of the ordinary and sent me home with antibiotics and pred, but did see something on a second glance at my chest xray and thought it might be endocarditis, which it wasn't, and to him it warranted putting me into the hospital overnight for observation and tests. It seemed once I got there I felt worse and worse, so they caught me as my flare was really escalating. My overseeing doc guessed Wegs from seeing my lung CT scan results. I went home and then got a nasal biopsy from my ENT within a short time and was dx'ed. Since then, I've been treated by the pulmonologist who doubted I was really sick, since my ENT stated he doesn't treat Wegs. There are no experienced WG docs around here that I know of, but I'm doing pretty well. I do not have a severe case of Wegs, so far, compared to what I've read about on here.

It sounds like the stuff you've gone through is more severe, but yes, it makes sense that if you have Wegs, there would be times when the symptoms would seem to subside or lessen for awhile. There is such a thing as "smoldering" Wegs, which has been discussed on here. I'm just glad you'll be finding out soon and can get the proper treatment if you have it! Good luck!

[Maryte]

Thanks Anne,

That makes sense and sadly, makes me feel better.

It is true, when you hear other people's stories it is easier to see how you fit in. After reading medical material, it seemed that people just suddenly got deathly ill and after mega amounts of steroids, were pulled back from deaths' door and then walked a steroid tight-rope...... Yikes!

Thanks again,
Mary

[chrisTIn@]

...I will be having a biopsy next month.

Two small nodules...the bigger one being 7mm. This is the one they want to biopsy.

i have had other problems that include.....
Sinus problems

Mary :crying:

Welcome Mary, I hope you 'll soon know what the right diagnosis is.
A month to wait for a biopsy seems quite long.
You do not mention where you live. I wonder if there is someting like a 'Vasculitis Foundation' in your country, or area?
They might be able to help you sooner and better.
I also wonder if a sinus/nose biopsy would not be an option?

Good luck with the investigations. You came to an excellent place for help and support.