New to site. Will see rhematologist in July.

[3lazycats]

My biological father has wegeners granulamatosis. He was diagnosed at 40.
I will be 35 in July.

Back in september I was having trouble with my eyes. It might sound silly, but I just felt like I couldn't see. I got new glasses and the only trouble they could find other than that I needed a new perscription was high pressure in my eyes. They tried to treat it as glaucoma but the eye drops they gave my caused my eyes to turn vampire red and they made my eyes hurt. So they did some weird field of vision test and decided that it didn't seem like glaucoma. Finally my eye dr referred me to a real dr. (Honestly at the time I thought I had a brain tumor because I also had a lot of unexplained nosebleeds!)

The real doctor suspected that it wasn't my eyes at all but a sinus problem (which at the time I thought was crazy because I hadn't had a cold). He wanted to do a head ct scan but at the time my husband had just started a new job and we were waiting on his insurance. While I waited for the insurance numbers my eye problem seemed to improve so I never scheduled the ct.

In january I downloaded a fitness app on my phone. I started counting calories. I also weighed myself regularly. And in one week with no explanation and the only thing I was doing different being keeping track I lost eleven pounds!

After that in February my period was 17 days late. Pregnancy is not possible for me (I do have 3 school aged children) because I lost a tube to an ectopic pregnancy 7 years ago and I lost the other side ovary to a ruptured ovarian cyst in 2013 (and in 2008 I had the tube that was remaining tied). I wondered if it was because of the unexplained weight loss.
I mention the late period because it seems like whenever I get my period my immune system dies. I seem to always catch a cold. So when I finally did get it this time I once again caught a minor sniffly type cold.

That at small cold progressed into a chest cold and a cough that got worse and worse until 4 weeks later I finally went to the dr. He diagnosed me with bronchitis with bronchiolitis and put me on a strong antibiotic.
Before the 10 day course of the antibiotic was up my chest hurt worse, my cough had not improved, and I was wheezier. So back to the doc. He extended my course of antibiotic for 10 more days, added 3 days of prednisone, and albuteral nebulizer treatments as neccesary.

I I improved on prednisone. But after my dose was over my cold was just as bad.

A week eek later out of the blue I developed a stiff swollen neck/lymph nodes and a swollen painful throat. By the next day it was the worst head cold of my life and by the next day I couldn't get out of bed. My nose was just thick yellow snot.
I went to the dr. Upon looking at my throat he said I either had severe mono or severe strep. He ran tests for both and both were negative. He said it was just a virus and that if I wasn't better by Wednesday to call back. I stayed in bed for three days.
Thursday I called and said I wasn't better. He called in a perscription for a weak antibiotic and a stronger 3 day course of prednisone.
I started it immediately. It was so crazy but within hours of taking the prednisone it was like my body just relaxed and sighed with relief! I improved only to the point of functioning.
Two days after I stopped taking the prednisone I was just as sick as I had been to start with!

At this point I mentioned that bio dad has wegeners. So I went back to doc. He ran some blood work (NO ANCA TEST). He said that everything looked normal and "there are no signs of inflammation so there is no way you have wegeners". He called it a very bad virus and said that my body just couldn't handle it. He decided to do a 15 day tapering down dose of prednisone.
I felt functional on day 1 through 3 but just not better like I felt I should. (Keep in mind that from that first bit of time in feb, I had been sick for 11 weeks already).

So so I called back my doc. He said he had done all that he could for me and said I should see a different doc. She scheduled me for the next day.
The very first thing she said to me was that she has a wegeners patient and that I could absolutely have that. She could not believe how awful my nose looked! My bp (which had slowly been rising through this whole sickness) was a ridiculous 141/101!
she reviewed the labs the previous doc had ran and said that they were not normal, that my sed rate was very high.
She said she wanted me to see the soonest available rhematologist (which is now my appointment in July). And she said she wanted a ct scan of my head and neck. They got me in for that immediately.
My ct scan showed that every sinus cavity in my head that could be infected was deeply infected and one showed nodules. My tonsils were swollen and my lymph nodes were swollen. They had me come back and get an antibiotic shot and she put me on another antibiotic.

So so now I have 2 days left of prednisone, a half tablet each day. I am afraid that once I am done with that my cold will come back full force (as I have improved but still cough and still stuffy nose.

The thought of facing wegeners as a diagnosis is a scary prospect.

On on a side note I have also been flipping exhausted since this whole thing started. My ears have also been plugged. And I have also previously dealt with tounge ulcers.

Thoughts?

[3lazycats]

Oops. And one thing I forgot to mention. I have had an unexplained face rash for years. It almost looks like webbing or raised vveins. But my face is smooth as can be. It's just a red vein webbed look.

[Pete]

Hi,

From what you've reported, you could have GPA/Wegener's. Is there any way you can get to see a rheumatologist before July? (preferably one with experience treating GPA)? Where are you located? You should go to the Vasculitis Foundation's website where you will find a list of experts your local doc can consult with (generally at no cost). You could also try to get an earlier appointment if you live close to any of them.

If you're located near one of the Vasculitis centers of knowledge (Cleveland Clinic, Mayo Clinic, Johns Hopkins, etc) in the U.S., you may be able to get in much sooner. Also, Cleveland and Mayo have satellite centers that may be more accessible for you.

Good luck and welcome to the Forum. This is a great place to share experiences, get advice, or just vent when you're frustrated with our dumb disease. There are people from all over the world on here, so there's someone looking at this forum almost 24/7/365.

[annekat]

Welcome to the forum, 3lazycats! This all sounds very Wegener's like to me, too. Don't be afraid of having it, it isn't the end of the world, but you do need proper treatment ASAP. Most of us here have done well with treatment and are living reasonably normal lives.

It is true that you need a good rheumatologist with experience in WG, or who can rule it out if you don't have it. However, July is a long time to wait, and if you can't get a rheumy soon, there are other alternatives for more immediate action. Do you have an ENT? It sounds like you need one. He or she can clean out your nasal and sinus passages, look at your CT scan and bloodwork, and take a sample from this area for a biopsy, which could diagnose you. The second doc you saw should be able to refer you to someone and follow through on the results. If the biopsy comes back positive for WG, any doctor should be able to start you on treatment. If they are uncertain, they should be able to consult with one of the experts Pete mentions above. But it is not that hard to find out what meds are commonly used, and in what amounts, in a case like yours. I would also keep checking at the rheumy's office for possible cancellations, so that you could maybe get in earlier. Eventually, you want to be sure you are getting the best treatment possible from an experienced rheumy and other members of a medical team, as necessary. But I think it is important that you get started before much permanent damage is done, which could lead to permanent hearing loss, septum collapse and 'saddle nose', etc. Best of luck to you, and keep us posted. Finding this forum is a big step in the right direction! We are not doctors, but have lots of helpful experience in this disease.

[JimmyJames]

Your situation sounds too similar to mine and I am sure many others. The fatigue is probably my worst symptom I dealt with prior to and immediately post start of treatment. I hope you can get into a rheumatologist sooner rather than later so you can start to get things straitened out.

[Dirty Don]

Welcome 3lazycats, this is the place to be for anything WG. Lots to learn, share, vent, etc. Sounds as if you have some form of an AI for sure. My sinuses were pretty much wiped out, and I ignored the signs of rashes, wandering aches, feeling rundown all the time, the cough...until the blood started coming out. Docs suspect that I had this for at least 2 years prior w/o a proper dx. I pushed it too far and ended up in ER, ICU, and rehab for 17 days...10 of which I was out cold and on life support. You don't want to get to that point. Nearly 4 years later now, I am 'normal' as in new normal and functioning quite well. We all have to learn how WG has affected us and how to prevent that again if possible. I'm at a point where I'm nearly off the MTX and completely off pred now for a year. I keep hoping I'll get off the mtx, but docs take no chances as my ANCA continues to hover near the cut off point. This is a long road for us, and you will/need to get educated about the disease & continue to deal with it appropriately (not thru hearsay or the newest discovery out there) with proper docs, meds, rehab, and support. Best to you...

[3lazycats]

I finished my last prednisone on Thursday.
I finished my last antibiotic yesterday.

And today my cough is worse.

I really wish I could get in before July.

[PattyL]

Hi there,

I hope you do not have wg but all of your symptoms sound all to familiar. I have not heard of it being hereditary. I was diagnosed over 20 years ago and now am going through one of the worst flares ever. My ent diagnosed me at that time. I now have kidney,lung, involvement along with severe fatigue,saddle nose, I have been on 40mg prendisone daily for almost 2 months. Now with side effects tingling in legs and hands, moon face, muscle weakness, dizziness. The disease is horrible. Try to see your Dr before July.

[annekat]

It makes no sense for you to be stopping prednisone if any doctor thinks you well may have WG and you are not on any of the standard immunosuppressants. Like everyone says, July is too long to wait to see for sure if you have it and to get treated for it. Can you try another rheumatologist? Or ANY other doctor that can help you? An ENT or an experienced internist who knows how to get a diagnosis and what the treatments are? I should be seeing a rheumatologist but I'm not. I'm being treated by my pulmonologist, and while he isn't my favorite person, it has worked out pretty well. I haven't switched to a rheumy because it is too hard to know, in my community, that there are any rheumies who have WG experience and would be any more qualified than my pulmy. The point is it doesn't HAVE to be a rheumatologist to get you started, if one isn't available! You can always wait until July to see him, but having gotten a start on your treatment ahead of time would be a big head start in slowing down the progress of the disease and preventing damage. The rheumy then can always change or adjust the treatment later. I really don't think this can wait! Please try to get seen by someone who can dx and treat you, or get one of your docs to push for the rheumy to see you sooner. I really don't understand why any of them would think it is OK for you to wait.

[kaysee]

Welcome to the forum. As others have said it sounds like Wegeners to me. I agree with everyone else - July is too long to wait to see the rheumy. Did you make the appt or your dr? I would ask the dr who recommended you see a rheumy to make an appointment for you and to explain that your situation is urgent. Another dr can get you in sooner than if we make the appt ourself. I wish you the best.

[3lazycats]

My doctor made the appointment with the soonest available.
I saw my regular doctor again today. It was actually a follow up appointment for my blood pressure. Which today was a terrible 146/97. So on bp meds I will go.
My "cold" symptoms are a lot better. But she looked in my nose and said it looks really swollen inside. And my ears have had fluid in them for four months now. (No infection, or pain or anything).
the absolute worst thing lately is fatigue. I feel like my body was meant for a 6-8 hour day. Not a 12 hour day.

[annekat]

My doctor made the appointment with the soonest available.
I saw my regular doctor again today. It was actually a follow up appointment for my blood pressure. Which today was a terrible 146/97. So on bp meds I will go.
My "cold" symptoms are a lot better. But she looked in my nose and said it looks really swollen inside. And my ears have had fluid in them for four months now. (No infection, or pain or anything).
the absolute worst thing lately is fatigue. I feel like my body was meant for a 6-8 hour day. Not a 12 hour day. I'm glad things are moving along but still wish someone would keep you on some treatment between now and your rheumy appt. Unless it is quite soon. As for the blood pressure, yes, that is somewhat high, but it could be worse. I, too, would be concerned if it is always that high. But as you probably know, it can be higher in a doctor's office due to anxiety. She is the doc, not me, and is familiar with your history, so putting you on bp meds is probably a good idea. But I've had mine almost that high while in the office and not gone on meds. I have a bp monitor at home and use it sometimes. This morning when I was kind of worked up about something, it was 141/89 and then about half an hour later, it was 117/75. So I guess mine is sort of all over the place. I hear you on the fatigue. That should get better when you get some treatment, but most of us continue to live with it indefinitely. Keep us posted.

[3lazycats]

Oh man.
I have been generally healthy the last month.
But my ears have had fluid in them since I started "doctoring". And now I feel like my balance is off.
So of course I dr googled. And of course found this: Autoimmune Inner Ear Disease | Vestibular Disorders Association (http://vestibular.org/autoimmune-inner-ear-disease-aied). In which wegeners is mentioned. My spirits fell.

July isnt too far away.
How many of you have ear problems?

[annekat]

I am getting email notification of your latest post on vestibular disorders of the ear but am not seeing the post here on the thread. maybe it will turn up soon. I looked at the link you posted and it is interesting. Yes, we have had many ear problems on here including blockage from inflamed eustachian tubes, or tubes that are too open, infections, balance and dizziness problems, and of course hearing loss that can either be permanent or can improve to a normal state eventually. I myself have permanent hearing loss, an eroded ear drum, and have had troubling cases of vertigo, which seems to have improved since the ear with the missing eardrum has grown a layer of skin over the hole leading into the middle ear. My ENT was always pretty vague about the causes of the vertigo and other problems, but did mention "debris" one time, as was mentioned in the article. It's also been shown via an MRI or CT scan that there is fluid in my mastoids, the porous bone area behind the ears. The ENT did not seem too concerned about that and said it had gotten absorbed into there from the fluid trapped in the middle ear. It all seems very vague and hard to understand. Some have enough permanent damage to the inner ear to need cochlear implants, though I have little understanding of those. Everyone is different, and I hope your ear issues can be reversed with treatment. This would be a reason to try to get a sooner appointment with the rheumy, or another doc to prescribe treatment. The longer one waits, the more damage can be done that can't be reversed.

[annekat]

Oh, now I see your post that I could only see in my email notifications has showed up for me in the thread. That delay doesn't usually happen and I wonder if it has to do with maintenance being done on the site. Anyway, I know others have had many ear issues and will probably respond. I need to do some more research to get a better understanding of words such as 'vestibular'. I'm a little too fried tonight to do it, though.

[drz]

Oh man.
I have been generally healthy the last month.
But my ears have had fluid in them since I started "doctoring". And now I feel like my balance is off.
So of course I dr googled. And of course found this: Autoimmune Inner Ear Disease | Vestibular Disorders Association (http://vestibular.org/autoimmune-inner-ear-disease-aied). In which wegeners is mentioned. My spirits fell.
July isnt too far away.
How many of you have ear problems?

I had no problems recognizing my balance problems as being caused by my Wegs. My hearing disappeared in the right ear leaving me functionally deaf. I was already missing my middle ear on the left side from prior infections and and several operations. The balance problems seemed more pronounced on the right side. An MRI confirmed the presence of a granuloma on that side.

Like the link above on vestibular hypofunction describes: Bilateral Vestibular Hypofunction | Vestibular Disorders Association (http://vestibular.org/BVH)

Normal postural stability while walking requires the combined use of at least two of three sensory cues (visual, vestibular, somatosensory). Patients who have no vestibular function, therefore, will have difficulty when either visual or somatosensory (touch) cues are also significantly decreased (e.g., walking in the dark). Although balance may be poor, it is not known what the actual frequency of falling is for patients with BVL. One study reported that 70% of patients with BVH under the age of 65 reported falls related to their bilateral hypofunction and 58% of those 65 to 74 years of age reported falls related to their BVH.6

Since we need two senses visual, touch, or vestibular to maintain balance. My vestibular hypofunction and neuropathy impair two out of my three so I often feel off balance and tend to fall over if I close my eyes so I have night lights on to help avoid falls in the dark and tend to touch things whenever I walk to help keep my balance. A cane can help me walk straight but then I walk much worse when i stop using it so I try to get by without it most of the time. I also do fine if some holds my hand or touches me while I walk.

Vestibular rehab helped me a lot. Before then I couldn't drive safely since I got dizzy whenever I turned my head. As the article explains:

Another problem for patients with bilateral vestibular loss is the visual blurring that occurs during head movements. Almost 70% of all patients with BVH complain of oscillopsia even after a course of gaze stabilization exercises.7 Greater intensity of oscillopsia occurs in patients with absence of both inferior and superior vestibular nerve function. In addition to the subjective complaint, patients also have a documented decrement in visual acuity during head movements. Interestingly, several studies have demonstrated that the subjective complaints of oscillopsia does not correlate with the actual decrement in visual acuity during head movement.5,8,9

I still stagger or side step a lot to avoid falls. I don't do the exercises anymore that i was given during rehab and generally feel OK. Maybe I just got used to the problems or else the symptoms lessened. I think a bit of both since I do have to be careful everyday to try not fall and have many close calls most days and some falls too. I guess it is just another of many adjustments to accepting my "new Normal" after Wegs and the damage it caused.

This article confirms what I have learned. Thanks for posting it.

[little sister]

Your symptoms are very similar to mine except my problems started very recently (December 2014). I was officially diagnosed in May and am on prednisone and will start rituximab infusions this Friday. Anyway, while you are waiting to see the rheumatologist more damage is being done. Call the rheumatologist back up and explain to the gate keeper that your doctor suspects GPA (granulomatosis with polyangiitis) which is a life threatening illness that can progress very quickly. Tell her you need an appointment ASAP. My daughter works in a doctor's office and she says they always have some slots open in an emergency. At the very least, ask to be put on a waiting list for if any appointments come open sooner. Also, try other rheumatologists. And have your referring physician call the rheumatologit's office to ask for a sooner appointment. I have been soooo lucky with my quick diagnosis and so much more. But my family pushed me to be assertive in making appointments. I was going to say I'm not trying to scare you, but if it helps you get seen sooner then I am. The reason I know how fast it can progress is that my sister was diagnosed the end of May.
In March she tried to make her appointment with the rheumatologist and couldn't get one until early June, several months away. In May her kidneys failed before she ever got to that appointment and she died in October.

[annekat]

Little sister, thanks for that. I'm sorry and sad about the loss of your sister. It doesn't happen that fast to that degree for all of us, but this shows us once again that it certainly can, and that delaying can be deadly. It's hard for me to fathom that doctors don't know this and don't bend over backwards, without being asked, to get patients the appointments they need. And if someone has actually been diagnosed, or it is in any way suspected that they may be, there is no excuse, it seems to me. Best of luck to you in your own treatment of WG/GPA. Keep us posted.

[drz]

Little sister, thanks for that. I'm sorry and sad about the loss of your sister. It doesn't happen that fast to that degree for all of us, but this shows us once again that it certainly can, and that delaying can be deadly. It's hard for me to fathom that doctors don't know this and don't bend over backwards, without being asked, to get patients the appointments they need. And if someone has actually been diagnosed, or it is in any way suspected that they may be, there is no excuse, it seems to me. Best of luck to you in your own treatment of WG/GPA. Keep us posted.

This is hard to comprehend that one couldn't get appropriate treatment in a timely manner here in the USA. Both my treating doctor and consultant at Mayo have reassured me several times they will see me ASAP if I have a serious flare or get me in to one of their colleagues. And they have done so. The local hospital and doctors would also provide immediate treatment and consult with the experts if I was unable to get to their places quick enough. I have used both services a few times already. Being on maintenance meds also tend to buy one some time in getting more aggressive treatment when needed.

[annekat]

This is hard to comprehend that one couldn't get appropriate treatment in a timely manner here in the USA. Both my treating doctor and consultant at Mayo have reassured me several times they will see me ASAP if I have a serious flare or get me in to one of their colleagues. And they have done so. The local hospital and doctors would also provide immediate treatment and consult with the experts if I was unable to get to their places quick enough. I have used both services a few times already. Being on maintenance meds also tend to buy one some time in getting more aggressive treatment when needed. It sort of seems like it is the docs less experienced with WG who are more at fault here, out of ignorance, than the ones at places like Mayo. But even I have a doc who isn't experienced with WG, and who isn't even a rheumatologist, who was able to get me started on the proper meds as soon as I was dx'ed. That bought me some time during which it could be decided to refer me to someone else, consult with nationally known specialists, etc. And all the docs I've encountered here, whether the ENT, pulmy, or whatever, have been able to see me on short notice in a crisis. I don't know why rheumies should be any different, unless the crisis is not made clear to them, or their office staff is uninformed and unable to discern what is or isn't a crisis.

[renidrag]

I agree, I have been assured by PCP and Rheumatologist that they would get me in any time.
Little Sister, thank you for your very important input to this thread, I am sorry for the loss of your sister.
Dale

[annekat]

It seems the initial appt. with a doc is the one that we really need to push for. We could use a little more help from our existing docs. When I had a severe antibiotic-resistant ear infection (not knowing it was the beginning of Wegs), I needed an ENT and could not just call up and get one in a reasonable length of time, even though I had some sort of referral from my PA. But I had been to an ER and the doc there wrote up a detailed referral to one of the best in town, and that got me in within a week or less. That started my relationship with my ENT, who will see me on short notice, but I still didn't get dx'ed until a couple of years later when things got much worse! Not uncommon, unfortunately.

[3lazycats]

Well. I was hoping to make it to my appointment on July 8th without needing to see my doc in between. But I coughed up mucus with blood this morning. So she had me come in today.
A lung x-Ray looked good. She told me that if I don't have wegeners she will be surprised. Even though I have been generally healthy beside that (other than everything still being inflamed) she decided to put me back on a long taper of prednisone. Just to get me from here to my July 8th appointment.

[annekat]

Just so you know, a lung xray doesn't always show enough. In my case, right before my dx, it came back clean, according to the radiologist, and that was the story from my doc, until he took a second look and saw something slightly unusual, he thought, and sent me in for a CT scan. That came back showing numerous small cavitary lesions scattered throughout my lungs, which turned out to be WG. And that's when I was having lots of problems and getting worse by the day with what I'd thought was pneumonia. But between now and July 8th, with just the prednisone, if you seem to be on an even keel, and things don't get worse, you will probably be OK. I say this because it is clear that your choice is to wait for that appointment and not try to get treated with the standard WG meds, other than pred, before that. Keep in mind that WG can escalate quickly, or can go along in "smoldering" mode for quite some time. Blood in the mucus is not a good sign, though. If you could get a CT scan, you'd have a clearer picture of what is going on.

[3lazycats]

I just had a thought. Back in October/November of 2013 I had a bad bad cold, suspected pneumonia. I had a chest x-Ray which looked clear.
But then I had a twisted ovarian cyst and they did a ct scan to find it and it showed pneumonia in my lower lobes.

Maybe I should have my dr review that ct...

i mean that was quite a while back but maybe being that my X-ray was clear and ct was not it is worth a 2nd look.

[annekat]

I just had a thought. Back in October/November of 2013 I had a bad bad cold, suspected pneumonia. I had a chest x-Ray which looked clear.
But then I had a twisted ovarian cyst and they did a ct scan to find it and it showed pneumonia in my lower lobes.

Maybe I should have my dr review that ct...

i mean that was quite a while back but maybe being that my X-ray was clear and ct was not it is worth a 2nd look. That's an interesting idea, even though it was awhile back. If WG has been smoldering since then, it could show something, I would think. Although in my case, the smoldering took place in my sinus area, and when it went to my lungs, it stopped smoldering and escalated. Every case is a little different. Also, the pneumonia you had could have been a trigger for WG.

[3lazycats]

So. I had my appointment on July 8th with a rheumatologist. She assured me that wegeners doesn't appear to be genetic, and said I don't think you have that.
She ran some blood tests anyway, testing for wegeners, rheumatoid arthritis, and lupus. The tests have to get sent to mayo so they will take a few weeks for me to have the results.

The day I saw her also happened to be the day of my last dose of a tapered dosing of prednisone. (And my last dose was 10mg).

This time I REALLY noticed a difference taking prednisone. I felt nearly normal for the whole course. But once I went off of it WOW!
Day one off of it my throat felt swollen. Day two I was so extremely dizzy that I didn't leave my bed for half the day and then when I did (to take my kids to the county fair) I had chest symptoms and ache.
Day three everything seemed like it swelled back up (inflammation). Especially my nose. Day four...snot factory back up and producing.
Day five major chest pain, so bad that I dreamt about it and dreamt about things like smog and things that make it hard to breathe. Day seven a mouth ulcer and day eight a second mouth ulcer.

I feel like a mess. The worst is the chest pain. I just feel congested but it also hurts. And I want to call my regular doc so bad to explain all this to her but at the same time I don't want to go on unneseccary meds...so I have been trying to wait it out for the test results. But it really feels like I functioned so much better on the prednisone.

I dont know what to do but I can't keep on like this. It feels like it is work to just breathe (and like I mentioned in previous posts, chest x-rays have been normal).

What is wrong with me?

[LCL2013]

Interesting. No sure why they need to send the tests to Mayo. My Rheumy was able to tell me immediately from my blood work that I was ANCA positive.

That being said, I started with sinus/ear/throat symptoms in May-June timeframe. My family doc kept treating me (with antibiotics) for sinusitis. Sent me for sinus and chest x-rays. Nothing. Finally, by August I was fed up and scheduled an appt with an ENT who right then suspected WG and referred me to a local Rheumy.

Mind you, by now, my ears are so full of fluid I can't hear, my subglottic stenosis is so bad I can barely breathe, and I've been suffering horrible sinus headaches from the perpetual sinus pressure. Interestingly enough the torrents of mucus from my nose only had small amounts of blood. Had some nose bleeds but none as some others have described. The stenosis was the most terrifying aspect. Walking. talking, and breathing all at the same time was virtually impossible. Couldn't sleep at night because my throat would close up from the stenosis. HORRIBLE! I finally get a call from the Rheumy's office to schedule an appointment. The first available they had was 5 December. More than three months away. My response was, "ARE YOU SERIOUS"?! I'm suffocating and deaf and that's the earliest you can see me? I finally found an old retiring Rheumy who was able to see me in September. He put me on a treatment plan that was completely outdated and useless. Suffered that for a month before contacting the Cleveland Clinic.

Moral of my story...don't wait for them. Move mountains if you have to to get a diagnosis as quickly as possible.

[kaysee]

Don't sit around in misery waiting. Call your doctor and explain what is going on with you. It sure sounds like WG.

[annekat]

It sure sounds like SOMETHING, if not WG. They need to get to the bottom of it. Call your doc and tell him everything, and don't worry about going on meds if they will help you breathe. It sounds like going back on prednisone, for starters, would be a good plan, and if you'd been on it awhile, suddenly stopping at 10mg. could easily cause withdrawal symptoms. It might be unclear whether some of the symptoms were from that or were from an actual disease. In any case, not being able to breathe is unacceptable. Even though your chest xrays have looked OK, maybe you should see a pulmonologist, and get a CT scan, which would show more. There could also be allergies involved. We are not doctors, and I don't know what is wrong with the medical profession today that they will just dismiss someone, thinking they don't have a certain disease, without continuing to pursue the answers.

[Jaha]

3lazycats,
Welcome to the group, I know I'm a bit late chiming in, sorry. I think that not being able to breathe with chest pains is not just a little dangerous, but you should really consider going in to the ER. I feel that if you do have Wegener's, you aren't getting any better with the hurry up and wait treatments, please listen to your body a go to the ER, even if they just give you a breathing treatment and check your heart, at least maybe you will feel better for now. Wishing you all the best and go get the chest pains checked out.

[3lazycats]

Being that I have had all of these same symptoms since February it isn't a new or emergency situation.

I am highly discouraged though.

[drz]

Being that I have had all of these same symptoms since February it isn't a new or emergency situation.

I am highly discouraged though.

Weg symptoms can smolder for months or even years and then break out like a forest fire and quickly become critical and life threatening, especially if they are not being held back or partially contained by some appropriate meds. Do you have an expert consultant or knowledgeable person directing your treatment?

[3lazycats]

Well thank you everyone for waiting it out with me. My results were all normal. No wegeners, no lupus, no rheumatoid arthritis (those are the three they tested for).

Its good news but at the same time now what do I do?

[drz]

Well thank you everyone for waiting it out with me. My results were all normal. No wegeners, no lupus, no rheumatoid arthritis (those are the three they tested for).

Its good news but at the same time now what do I do?

Ask them to give you a diagnosis that will explain the symptoms you are having and a suggested treatment plan that will help you.

I have learned to tell doctors I need to know what it is, now that you have determined some things it isn't.

[annekat]

lazycats, I'm glad you finally got your test results. If you truly don't have any of those 3 diseases, I'm glad. But I think someone should be pursuing this further, with the symptoms you've been having. There should be docs who specialize in getting to the bottom of hard to solve cases. In my own case, my pulmonologist did not think I had WG because my ANCA was so low. There had been no biopsy done, but the overseeing internist at the hospital, where I was just overnight for testing, had suggested it based on the results of a CT scan the pulmy had ordered. A previous chest xray hadn't shown much, if anything. I know I've already mentioned this. I can't believe that after the CT scan, the pulmy was still resistant to my having WG. The internist was the smart one, but it wasn't his job to dx, so he sent me home with antibiotics and prednisone and instructions to see my other docs. Since the pulmy was out of town, I took it upon myself to get a nasal biopsy from my ENT, which proved positive for WG. (My saddle nose had just appeared, too, which sort of clinched it in advance). I did not have a rheumy involved in any of this, because its so hard to find one here who knows WG, but the process with the tuned-in docs I had (hospital internist and ENT) was fast and easy. The pulmy had to admit he was wrong and started me on treatment right away, since he was the only one willing to do it; it was the right treatment, and he's continued to treat me, successfully, for the most part.

I guess what I'm getting at is that Mayo interpreted the tests they were sent, but that is all they were in the position of doing. A negative ANCA is not conclusive. Did you ever have a CT scan of the lungs or any kind of biopsy? I would not wish a lung biopsy on you and would hope they could get it some other way. You cannot go on suffering with these symptoms..... have allergies been explored? Sorry if these questions could be answered by looking back at your first posts, which I did briefly. You need someone on your case to find out what is going on, and I'm thinking maybe a really good internist who is willing to take the time and expedite the process in any way possible. You could still have WG, and there are experts available for consultation, as I'm sure was mentioned above.

I don't know if you said where you are located, but maybe someone on here lives near you and could recommend a really good doc, whether a rheumy or otherwise, who would know that test results are not always conclusive and all possible physical tests, in addition to bloodwork, need to be explored. Best of luck to you.