Hello -- Looking for Info

[Sunrise]

Hey there.

I have not been diagnosed with vasculitis, so apologies if posting this is offensive or inappropriate in any way.

I joined because my symptoms, in some regard, seem a little too similar. Here's what I'm dealing with for over a year now: chronic nasal inflammation/congestion which can be remedied by almost nothing, and severe headaches with any type of exertion and certain movements.

A little background on me:

December 2014 (possible a month or so earlier) I started experiencing extreme fatigue. All I wanted to do was sleep, and did, for abnormal amounts of time. I felt like I had mono (which I'd had when a teen), except I was also beginning to sneeze a lot. I was sleeping with a box of tissue next to me, sneezing and sleeping and watching movies in bed because I didn't feel good. This wasn't normal because I had just graduated college and was supposed to be out looking for a job.

This fatigue and sneezing went on for many months, and finally in late February, I got an upper respiratory infection. It felt like what previously happened had been a build up to that, but for months? I imagine not. I was sick for the normal week or so, put on an antibiotic pack, and recovered. I had about two days of feeling good, and then after hanging out with a friend, was hit with a sinus infection that blocked my nasal breathing completely. Foolishly, I didn't go back to the doctor (not that it would have done anything), and decided to let my body fight it out.

I never got better. My nose stayed messed up, and breathing out of it was difficult unless I was standing and moving around. I got a job, but always needed to excessively blown my nose, which started to have a whistle. In April, I couldn't take the stuffy nose and congestion, caved and got an OTC nasal steroid spray. This helped me for many months, but not all the way. I still had congestion and inflammation. I could only sleep on my right side.

July 2015 comes and I'm working in the city. My nose is always messed up, but manageable with the nasal steroids when I'm up and about, and I'm doing the best I can. I'm on my way to work one day, run down the stairs of the subway, and get a severe thunderclap headache that caused me to get disoriented, it was so intense. I went and got an MRI, a CT scan with dye, a scan of my sinuses, and a doppler done to look at blood flow. Most recently I have had an MRA/MRV of head and neck. Everything comes back clear, or "unremarkable." I still have all of these same problems to this day.

Between then and now, I have seen three ENTs, three neurologists, an allergist, integrative medicine dr, my primary, Mount Sinai headache clinic neurologist, infectious disease, and I am IMPATIENTLY waiting for a rheumatologist appointment NEXT Monday (and a partridge in a pear tree...ya, had to). My diagnoses:

Migraines
Tension Headache
Allergies
Allergies//possible inflamed turbinates that need reduction surgery
Allergies
Being Overweight
Allergies
Bacterial infection when culture of my nose found overgrowth of Klebsiella Pneumoniae

Everything is also made complicated by the fact that I have Psuedotumor Cerebri. I was supposed to get a spinal tap recently to see if my headaches are from spiked or depleted CSF, but once off the antibiotic, I became too sick again.

The only thing that has ever cleared me up, almost immediately, has been Prednisone. When I went to the second ENT, who found nothing wrong with my sinuses through scope or CT Scan, I had to plead with her how uncomfortable and horrible my life was being made by my nose and headaches. After lecturing me about losing weight for half the appointment, she gave me a script for Prednisone at 60mg and tapering. I WAS IN PARADISE. My nose and head cleared up almost immediately, and I thought I was cured for good - was ready to start getting back to life. Four days off of Prednisone, my headaches came back (a little lighter), and almost exactly a month to the day later, my nose started acting up again. It was horrible.

I wasn't put on steroids again, as I have more access from my left than right side of my nose, so grin and bear it, and knew it was just a band-aid for inflammation (I've been set on a long standing bacterial take over). Everything in between was hopping from doctor to doctor hoping for an answer. After the last horrible ENT, I went to my primary and begged for help. She was reluctant to say what to do or where to go, as this "wasn't her area." I wouldn't budge from the table. She looked in my nose, saw it was extremely inflamed, and took a culture. It came back with the klebsiella, and I thought that was it. We were all so happy to have caught it and I was put on three weeks of Levaquin, which also cleared me up at about 70%. Ten days off of it, BOOM, nose is messed up again. After going to infectious disease, and her not being convinced about a bacterial issue, I was told to make an appointment with a rheumatologist. Not only because of my symptoms that lasted too long, but because my hs-CRP is almost 17. I'm also in a high range with my CCP for RA. But i was told that can go high if you have high inflammation period.

I have fired doctors left and right when I hear something as dumb as migraine or allergies. I've never had this problem before in my entire life, especially regarding allergies and have refused to believe that it is something so simple. My whole life is on hold. I haven't worked for months, have been extremely physically limited and uncomfortable, and have been considerably depressed about it. I'm 27 and was just starting to live my life.

I do not want this, but the nose thing especially sounds too similar. I have tried literally everything to see if it's allergies: taking shots, taking allergy pills, getting a depo-medrol shot, suuuper restricting my diet (no gluten, dairy, grains of any kind) and nothing has helped. Except for a round of antibiotic (a bit) and especially that round of Prednisone.

Does any of this sound familiar or like I could have this? I do not want it. At the same time, I cannot live like this. There is a part of me that will be relieved to get a diagnosis, just so I can get on steroids, as I know they help me so quickly. I'm also having so much trouble waiting to get into the rheum -- are there tips and tricks to get in sooner? It's so hard to keep suffering like this.

I'd also like to mention that before any of this happened, I was going through a period of extreme stress. I regret it if it somehow did this to me!

Thank you for reading, and I hope you're all doing well.

[vdub]

There are 3 things that make your situation sound like its possibly wegs. First is the sinus involvement which gets better with nasal steroids, but not antibacterials. Second is the upper respiratory issues. And, third, is that you felt better when put on prednisone. Unfortunately, high doses of pred makes almost everyone feel better for a short period of time for a whole range of diseases.

The ENT is often the first step toward a dx of wegs and the rheumy is the guy who will usually make the dx and is the person who would treat you if you were dx'ed with wegs.

The headaches could also be associated with wegs, but is extremely rare. I think I'm one of only 2 or 3 on the forum who have had brain involvement due to wegs. In my case, it attacked my pituitary gland. Its a 1 in 10,000,000 chance and only 22 people since 1966 according to one study had been dx'ed with this particular type of wegs. My rheumy declared me as number 24 and a young lady in Denver is 23. I believe 25 has been identified and is in New Zealand, but not sure. Maybe you are number 26.

Something you might want to consider is to have the rheumy review the CT scan of your lungs. If you have wegs, there is a good chance you will have granulomas in your lungs, but not necessarily. Also, have the rheumy talk with the radiologist to look at the MRI for granulomas in the brain.

A lot of your situation is similar to mine. I had sinus issues that were mis-dx'ed as a sinus infection for nearly 2 years and at the same time I had headaches that were getting progressively worse. It wasn't until I had brain surgery and the pituitary (and granuloma) were removed and sent in for analysis at mayo that I was finally dx'ed with wegs.

Best of luck with the rheumy and let us know what happens. Welcome to the forum. I'm sure others will chime in shortly and give their opinions. Good luck!

[Pete]

The persistent infection that's not responsive to treatment is worrisome. The elevated CRP may be symptomatic of Vasculitis or some other inflammatory disorder. Hope your rheumatologist gets it figured out. Good luck!!

[Christina32]

Hi Sunrise, welcome! You mentioned Mt. Sinai... Is this where you'll be going to see a rheumatologist?! Hopefully one in the Vasculitis center. There are some of the best docs there who are very experienced with wegeners, among others. If possible, obtain your medical imaging to take with you. This can be done by calling the hospital you received them. I was told to do this and did however I was also coming from out of province. If you're in Ontario I'd guess they could have access anyway? This should be a good appointment for you if vasculitis is suspected and I really hope it brings you to proper treatment. Best wishes....

[Sunrise]

Thank you all so much for the responses.

I really hope I don't have it but it's almost like nothing else makes sense at this point. I have all of these high inflammation markers: hs-CRP, ESR that I'm waiting to hear back about.

Thankfully, I got my appointment moved up from Monday to this Friday. I was honest, and said that the symptoms (blocked nose) were really hard to deal with. I get so blocked up at night, and it's so uncomfortable, that I've been forced to use Afrin -- which I HATE because I know it can make matters worse, but it's the only way I breathe easily. Besides that, I just feel like garbage.

@vdub -- I have had so many tests on my brain, would those things be hiding even in the imaging? I've had an MRI of my head, CTA, MRI w/gad, MRV, and MRA. Is it possible that granulomas wouldn't show on all of these? I DO NOT want brain surgery. I'm sure you didn't want it as well.

@Pete -- I don't even know if it's an infection. Everything comes out clear, sometimes if it's really bad, streaks of blood -- I imagine from sneezing so much. But yes, this is why infectious disease didn't want to give me anything more and wanted me going to a rheum.

@Christina -- Mt. Sinai in NYC, is that who you're referring to has a good vasculitis team? I went to the headache clinic there, but had to abruptly stop when I got sick in my nose again. On the Vasculitis Foundation site, Mt. Sinai didn't come up, a few other hospitals did. I will be seeing a rheumatologist in my state, NJ. I hope she's good. She doesn't have great reviews, but I was being referred to her by two different doctors. Vasculitis was suspected by the neuros (my original and Mt. Sinai dr), but all of my tests came back clear -- not sure that really means anything, as maybe it can't show the attack of tiny vessels?

If I do in fact come back with having vasculitis or some other autoimmune disorder, should I stay with the doctor who diagnoses it, or get in with a specialist ASAP? I saw (through here) that the Cleveland Clinic is one of the tops for this, or at least highly recommended, and I will go if that's what it takes. I imagine this is a premature question, but what is the best root of action if you get a diagnosis of this? I just want to jump on it ASAP because, well, it seems like one of those things that needs to be jumped on, and I just want to gain some life back.

Thanks again to all of you

[Pete]

The Mt Sinai hospital referred to above is in Toronto.

[MaxD]

Sunrise: I live in NJ and see a rheumatologist in Morristown who I can recommend. I also regularly see Dr Robert Spiera in Manhattan - he's one of the foremost Vasculitis experts and very thorough. By the way, you don't seem to have an ANCA test yet - make sure your rheumy gets that tested. Good luck.

[Sunrise]

I just found out from my neuro (who was suspecting vasculitis in my head) that she did get an ANCA test and it came back negative. She's not sure if it was a full panel, I guess in regard to what a rheumatologist would order. I also read that in cases where WG is limited to the nose, ears, and lungs - ANCA can come back negative but you can still have WG. Is this a true experience for people? I am only suffering in my nose (and possibly my head because of unexplainable headaches), so how likely is it that ANCA coming back negative, but having WG is the case? Not sure anyone can definitively answer that.

I I went to see an ENT today, since the rheum office told me to go in the mean time. And once again got the allergy shpeel along with a, "I don't know what to do for you." I really do not understand these lazy, small minded doctors. What is the point of being a doctor?? You are studying medicine, not picking one of five things and going with that despite a pleading patient. The only other thing that's been worse than going through this, is dealing with completely dismissive doctors that I need help from. Like ENTs. It's my nose. Nose is in their specialty title. But they clearly don't deal with it. It's stunning.

[annekat]

We've heard on here many times that the ANCA test can be negative and the person can still have Wegs. Mine was barely positive. I hadn't heard the part about it applying to those with only nose, ears, and lung involvement, but those are the involvements I have. An ENT should be able to deal with WG and they are the ones who do a nasal biopsy, if one is done, as in my case. My ENT does not treat the disease as far as prescribing the meds, etc., but does discuss and explain what is going on in there, recommends hearing tests, does CT scans of the head, and prescribes ear drops and things related to the area. He would do a tracheal scope if it was suspected to be necessary. Just keep trying ENTs, I guess, until you get one who can deal with it.

[Alias]

I have "limited" Wegeners, and had positive C-ANCA, but as others have said, negative ANCA does not necessarily rule out the diagnosis.

ENT's "should" know about this disease, but really it is so rare that it is not surprising that many do not. After my diagnosis (by a rheumatologist) I found it helpful to see an ENT subspecialist called a rhinologist to help me understand what was going on anatomically and to get advice on self care.