New and looking for advice on getting a speedy diagnosis

[psls4]

Hello all,
I'll start by saying I had an uncle who lived with Wegener's for 20+ years. I know very little about his case. He had a stroke in his 40's and had to endure kidney dialysis for many years due to Wegener's.

I have been having symptoms (issues with throat 12 months ago-which the ENT concluded after treatment with diflucan that I was cured), tightness in chest-which comes and goes with no rhyme or reason a month ago(in the process of test with cardiologist- with appointment on Monday to discuss findings from stress test). Saw nurse practitioner in family practice yesterday had CBC, metabolic panel and urinalysis. Blood work was said to be normal. Urinalysis - abnormal. NP ordered abdominal ultrasound for gall bladder.

After looking online and seeing the symptoms of Wegener's, I find that I have had throat, heart and possibly kidney symptoms. I was wondering if anyone had suggestions on how to speed up diagnosis, so if it is Wegener's, I will hopefully get meds sooner, slowing down any damage to my body.

It's so very stressful, knowing what my symptoms are and having to wait for Dr.s to pass you around from office to office wasting time!

I'm located in NC, USA and would appreciate any direction on what Dr. to see.

Thanks in advance for all your support.

[Dirty Don]

Welcome psis...good place for you to come with questions...good people here! I'm not in the east, but there are many on here who can direct you to a WG experienced doc/clinic. Off hand, I imagine Johns Hopkins and Mayo/Jax would be closest to you. Perhaps you have WG experienced docs nearer, especially a good rheumatologist. You may also go to the Vasculitis site for lists/numbers of WG clinics/docs. If you are using your primary, it is likely this person may not know enough about AIs, let alone WG. Hang in there...the best things you can do now are be persistent and have fortitude. Best to you!

[drz]

By the time you have kidney problems from Wegs, other Weg symptoms should usually have been present, but kidney problems are serious and need to be checked out quickly. One of the worlds best Weg doctors is a nephrologist at UNC kidney Center in Chapel Hill and I would see him ASAP.

[Wegetarian]

Shouldn't the ANCA & PR3 values from the blood tests give a good indication? I mean its not always positive for Wegs, but if they take it and its positive it should be fairly reliable.

Anti-neutrophil cytoplasmic antibody - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Anti-neutrophil_cytoplasmic_antibody)

[psls4]

By the time you have kidney problems from Wegs, other Weg symptoms should usually have been present, but kidney problems are serious and need to be checked out quickly. One of the worlds best Weg doctors is a nephrologist at UNC kidney Center in Chapel Hill and I would see him ASAP.


Thank you so much! Do you have a name for the nephrologist at UNC Kidney Center?

[psls4]

I have the cbc and metabolic panel results. However, I'm not sure if ANCA & PR3 values were checked. Are those tests that are routinely in a CBC or Metabolic panel or are they tests that are added to upon request or suspicion of the WG?

[psls4]

Welcome psis...good place for you to come with questions...good people here! I'm not in the east, but there are many on here who can direct you to a WG experienced doc/clinic. Off hand, I imagine Johns Hopkins and Mayo/Jax would be closest to you. Perhaps you have WG experienced docs nearer, especially a good rheumatologist. You may also go to the Vasculitis site for lists/numbers of WG clinics/docs. If you are using your primary, it is likely this person may not know enough about AIs, let alone WG. Hang in there...the best things you can do now are be persistent and have fortitude. Best to you!

Thank you so much. I will be persistent and have fortitude.
This forum has been so valuable to me in just 24 hrs, people have shared helpful information that will point me in the right direction for answers to what is going on with me and how to best treat. I will keep you posted.
Best to you as well.

[Dirty Don]

I have the cbc and metabolic panel results. However, I'm not sure if ANCA & PR3 values were checked. Are those tests that are routinely in a CBC or Metabolic panel or are they tests that are added to upon request or suspicion of the WG?

They are tests for WG, have to be requested. They are not always definitive though, keep that in mind as the docs go thru you! A 'slice' of you, your lungs preferably, tell if you have WG the best. Sometimes, a nasal or sinus sample can do the same if one is lucky...hmmm, wrong word I guess in this context! LOL! Keep at it, you'll get thru...just takes time.

[psls4]

They are tests for WG, have to be requested. They are not always definitive though, keep that in mind as the docs go thru you! A 'slice' of you, your lungs preferably, tell if you have WG the best. Sometimes, a nasal or sinus sample can do the same if one is lucky...hmmm, wrong word I guess in this context! LOL! Keep at it, you'll get thru...just takes time.

Thanks so much for the clarification. I was having symptoms in my throat and saw ENT 12 months ago. I'm no longer having the symptoms in my throat. I wonder if a sample was taken while symptom free in the throat area, if WG would still show up? My symptoms are moving around it seems, from throat to eyes to heart/chest area. Going to see Cardiologist tomorrow and will mention all of this to him.

[pberggren1]

Your case doesn't sound like Wegs to me but some cases of Wegs or other vasculitides can be very tricky. I'm sorry to hear about your Uncle's passing. I hope he did not suffer too much near the end. Do you know what he died from?

Dr. Ronald Falk is at UNC. He is very good. I even chatted with him on the phone a couple times. Very nice fellow.

[psls4]

Your case doesn't sound like Wegs to me but some cases of Wegs or other vasculitides can be very tricky. I'm sorry to hear about your Uncle's passing. I hope he did not suffer too much near the end. Do you know what he died from?

Dr. Ronald Falk is at UNC. He is very good. I even chatted with him on the phone a couple times. Very nice fellow.

Thank you so much, Phil. I'm not sure what the cause of death was for my uncle. I will try to reach my aunt or cousin to ask questions about his treatment and cause of death.
Thanks for the info on Dr. Falk!
Could you elaborate on why you don't think my case sounds like WG?
Thanks!

[pberggren1]

The heart is rarely involved with Wegs and your throat sounds vague. What is going on your your throat?

[psls4]

The heart is rarely involved with Wegs and your throat sounds vague. What is going on your your throat?

Oh, didn't know the heart is rarely involved with Wegs. Leave it to me to be the rarest of the rare. lol
The throat issue.....I had a "feeling" in my throat. It was really strange, as if something was in my trachea. I felt it every time I swallowed. I went to ENT, he scoped several times. He did see some yeast -which he said could be a sign of immune problems. However, after being successful with medication (by his observation with a scope) After asking if I needed a biopsy, he mentioned a biopsy could be done. However he would not suggest it since the tissue appeared normal. He thought the biopsy would show normal tissue.
Even though he said my throat was normal, I continued for a short while to have that strange "feeling" . It did subside and eventually go away(or at least I don't feel it anymore).

Thanks for your feedback. Will keep you posted as questions are answered.

[annekat]

Welcome psis4. I can't add much to what others have said as to the technicalities of Wegs diagnosis, except that I was one of the "lucky" ones who got a dx via nasal biopsy, which is much less invasive than lung biopsy. I also had a very low ANCA reading, which I think was ordered by the overseeing doc when I was in the hospital overnight for tests, and he guessed correctly that I had Wegs based on the CT scan of my lungs. But as soon as I got out of the hospital I noticed I had a saddle nose (no one in the hospital mentioned it, if they even noticed... I wear glasses, which sort of hides it). So, having already read about saddle noses on the forum and elsewhere, I got a quick appt. with my ENT and the nose was a pretty good indication to him that a nasal biopsy was in order.

It is classic, though, for a lot of us to have a very delayed diagnosis. Mine was actually 2.5 years after the onset of symptoms, and others took even longer. This is because the symptoms are so much like common afflictions such as allergies, asthma, and recurring sinus infections. It often takes something suddenly getting a whole lot worse, which in my case was my lungs, before anyone in the medical community thinks of Wegs as a possibility.

Anyway, I'm glad you found the forum and are getting a lot out of it already. This forum is really a class act, and full of outstanding people who happen to have Wegs. I hope you DON'T have it, but if you do, you will probably come to feel as I do that this forum is indispensable, and the very best place to get not only information but a great deal of support from others.

[psls4]

Welcome psis4. I can't add much to what others have said as to the technicalities of Wegs diagnosis, except that I was one of the "lucky" ones who got a dx via nasal biopsy, which is much less invasive than lung biopsy. I also had a very low ANCA reading, which I think was ordered by the overseeing doc when I was in the hospital overnight for tests, and he guessed correctly that I had Wegs based on the CT scan of my lungs. But as soon as I got out of the hospital I noticed I had a saddle nose (no one in the hospital mentioned it, if they even noticed... I wear glasses, which sort of hides it). So, having already read about saddle noses on the forum and elsewhere, I got a quick appt. with my ENT and the nose was a pretty good indication to him that a nasal biopsy was in order.

It is classic, though, for a lot of us to have a very delayed diagnosis. Mine was actually 2.5 years after the onset of symptoms, and others took even longer. This is because the symptoms are so much like common afflictions such as allergies, asthma, and recurring sinus infections. It often takes something suddenly getting a whole lot worse, which in my case was my lungs, before anyone in the medical community thinks of Wegs as a possibility.

Anyway, I'm glad you found the forum and are getting a lot out of it already. This forum is really a class act, and full of outstanding people who happen to have Wegs. I hope you DON'T have it, but if you do, you will probably come to feel as I do that this forum is indispensable, and the very best place to get not only information but a great deal of support from others.

Thanks so much Annekat. It is so helpful hearing others' stories and what they have experienced. I appreciate you sharing with me your experiences.
The support on this forum is wonderful and so needed. So, thank you for that!

[gilders]

Anne and Phil have spoken a lot of sense, again:thumbup:
As Phil said, I also wouldn't immediately suspect WG. I think nose and sinus would be involved first and it would only get worse, not tend to move around your body as you mentioned (more body parts are likely to become involved, but not move from one part to another)
Anne mentions that symptoms can go on for a long time (2.5 years for her) then suddenly all hell breaks loose. This period varies greatly. I think it was about 6 months for me before I was rushed in to hospital.
I'm awaiting results for nasal biopsy, but as Anne said, you have to be "lucky" for WG to be confirmed with this fairly non-invasive biopsy. It has always been kidney biopsies that have confirmed activity with me.

Although I don't think you have WG, it's a good idea to bring it up with your Dr as WG presents itself in so many different ways.

[gilders]

Forgot to mention. As for the heart involvement and WG, it's hard to say. I have heart failure (left ventricular dysfunction, moderate-severe). My nephrologist, who is also my WG specialist doesn't think it's connected. My cardiologist hasn't really got a clue (but doesn't admit it). When one of my heart results improved, he said it was the treatment for my haemochromatosis that has improved my heart results. I reminded him that the scan I had in London didn't show any iron deposits in my heart (i.e. haemochromatosis has not effected my heart). He then said it must be because your Wegener's is now in remission (i.e. there is a WG and heart failure issue).
In case I scared you by mentioning Haemochromatosis, I can confirm that it definitely has nothing to do with WG.

[psls4]

Forgot to mention. As for the heart involvement and WG, it's hard to say. I have heart failure (left ventricular dysfunction, moderate-severe). My nephrologist, who is also my WG specialist doesn't think it's connected. My cardiologist hasn't really got a clue (but doesn't admit it). When one of my heart results improved, he said it was the treatment for my haemochromatosis that has improved my heart results. I reminded him that the scan I had in London didn't show any iron deposits in my heart (i.e. haemochromatosis has not effected my heart). He then said it must be because your Wegener's is now in remission (i.e. there is a WG and heart failure issue).
In case I scared you by mentioning Haemochromatosis, I can confirm that it definitely has nothing to do with WG.

Hello Gilders, thank you for your response.

What were your heart symptoms? How were your heart issues discovered (what kind of tests were done)? What was the treatment for your heart?

Thanks, Psls4

[gilders]

Hello Gilders, thank you for your response.

What were your heart symptoms? How were your heart issues discovered (what kind of tests were done)? What was the treatment for your heart?

Thanks, Psls4

A very brief background first - Having been diagnose with WG 19 years ago, I manged to get back to work. I then had repeated relapses and returned to work each time building my hours back up. The last time I returned to work I couldn't increase my hours and eventually had to admit I'd returned too soon.

It was at this point I found out about heart condition. I was trying to build my health back up so that I was fit enough for work by going for walks. These short walks were getting harder and harder. This was quite a normal WG symptom (very weak, etc). More symptoms started to appear though. I began becoming a lot more breathless than usual and my heart was pumping away like I'd just sprinted, non-stop, for an hour. Again I thought, I'm just unfit and struggling to get over my last WG relapse.
Then when I was getting breathless, my sight kept fading and I'd faint. At this point I went to my GP who listened to my heart.He wasn't happy and the next day I was in hospital for an ecg and echocardiograph. The echo showed that I had left ventricular dysfunction at a moderate to severe level. This means that my left ventricle (the main one for pumping blood around your body) wobbles rather than pumps. This leads to a build up of blood in your heart and has resulted in an enlarged heart (I can truthfully say I've got a large heart:wink1:). This in turn, causes your blood to be less oxygenated and results in symptoms such as breathlessness.
As far as treatment I am on nothing that interesting - Lisinopril (for blood pressure) and Simvastatin (for cholesterol) (I was already on these anyway due to renal failure). I was on another tablet that helps to dilate arteries and veins, but as it didn't help alleviate my symptoms, he took me off it (think he mentioned a possible conflict with WG and kidneys).

I still get the same breathlessness and fading vision, but I can predict when it's about to happen most of the time now, so it rarely leads to me passing out.

[psls4]

A very brief background first - Having been diagnose with WG 19 years ago, I manged to get back to work. I then had repeated relapses and returned to work each time building my hours back up. The last time I returned to work I couldn't increase my hours and eventually had to admit I'd returned too soon.

It was at this point I found out about heart condition. I was trying to build my health back up so that I was fit enough for work by going for walks. These short walks were getting harder and harder. This was quite a normal WG symptom (very weak, etc). More symptoms started to appear though. I began becoming a lot more breathless than usual and my heart was pumping away like I'd just sprinted, non-stop, for an hour. Again I thought, I'm just unfit and struggling to get over my last WG relapse.
Then when I was getting breathless, my sight kept fading and I'd faint. At this point I went to my GP who listened to my heart.He wasn't happy and the next day I was in hospital for an ecg and echocardiograph. The echo showed that I had left ventricular dysfunction at a moderate to severe level. This means that my left ventricle (the main one for pumping blood around your body) wobbles rather than pumps. This leads to a build up of blood in your heart and has resulted in an enlarged heart (I can truthfully say I've got a large heart:wink1:). This in turn, causes your blood to be less oxygenated and results in symptoms such as breathlessness.
As far as treatment I am on nothing that interesting - Lisinopril (for blood pressure) and Simvastatin (for cholesterol) (I was already on these anyway due to renal failure). I was on another tablet that helps to dilate arteries and veins, but as it didn't help alleviate my symptoms, he took me off it (think he mentioned a possible conflict with WG and kidneys).

I still get the same breathlessness and fading vision, but I can predict when it's about to happen most of the time now, so it rarely leads to me passing out.

Wow, Thank you for sharing. You have been through a lot. It's great that you pick up on your body's cues and prevent passing out now. May you continue to cope well.
Your heart symptoms are different from mine. I have read about several members having difficulty breathing, for one reason or another.
On my stress test last week I made it 12 minutes on the treadmill before the technician stopped me. I guess he stopped me due to my heart rate....because I wasn't out of breath. I get the results of that stress test tomorrow (Monday). My ekg was normal. I do have pvc (premature ventricular contractions); which the cardiologists said are benign. So, I'm very interested in what the cardiologist has to share with me tomorrow concerning the results. I'm still having occasional tightness with inhaling and occasional pangs in my chest, more frequently now than when they started a month ago. I have not had a chest xray yet; but will be requesting one tomorrow(due to the sporadic tightness upon inhaling). I will also be finding out what the abnormal results of my urinalysis mean. The results were sent to me via email with a note saying it is abnormal; but not what the abnormalities could be.....which does not help my anxiety level one bit. An abdominal ultrasound, which was ordered by the Nurse practitioner, will be done in the morning prior to my Cardio visit.
being patient, psls4

[Alysia]

Hi psls, and welcome.
I found this:
Mitral Valve Involvement in Wegener's Granulomatosis (http://www.sciencedirect.com/science/article/pii/S0003497510006223)
I don't know if it can help....
anyway I hope you will soon feel better, this way ot another.
you can count on the experts here to give you valuable info.

[psls4]

Hi psls, and welcome.
I found this:
Mitral Valve Involvement in Wegener's Granulomatosis (http://www.sciencedirect.com/science/article/pii/S0003497510006223)
I don't know if it can help....
anyway I hope you will soon feel better, this way ot another.
you can count on the experts here to give you valuable info.

Thank you Alysia.

I had some very good news from the Cardiologist yesterday. My stress test/echocardiogram showed a healthy heart. Still not sure what was causing the tightness in my chest. I'm hoping it doesn't return.
I appreciate you finding the link for the MV involvement. I will keep it as a reference , incase I need in the future.

I agree about the experts on the forum...they have given me very valuable info.