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Old 10-21-2012, 12:23 PM   #1
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Wegener's Granulomatosis

Hi,
I was wondering if these symptoms sound consistent with Wegner’s?
I have had this terrible dry cough for about 10 months now, and I have tried everything to get rid of it/find the source of the problem. I have been tested for all the usual causes (GERD, Asthma, Sinus problems, etc) and they have found nothing. Yesterday, I went to the eye doctors and found out that I have severe dry eye with corneal inflammation. (This must have started sometime in the past year as well, since I was fine at my last visit.)
As I research online, I came across a description of Wegner’s, and many of the symptoms seemed to match. I have a lot of the respiratory symptoms (which I associated with the cough), hoarse voice, chest pains, etc. I have been getting nose bleeds about once a month and my vision gets terrible in the evenings (blurred and doubled to the point where I can barely function). In addition, I just feel so sickly everyday and get random joint and muscle pains (although this is fairly “normal” for me, even before this all started).
About 4 months ago, I had an episode where I thought I either passed a kidney stone or had a UTI one morning. This followed with about a week of lower right back pain, as well and what I called bladder cramps but it very well may have been something else. I went to the doctors several times but they never found any blood in my urine. This went away on its own…but still get the cramps occasionally.
Basically, I am worried I am just exploring causes of the cough and not looking at the full picture. I really hope I don’t have this, but I would prefer to find out sooner than later so we can hopefully do something about it. Thanks for any info you have about this disorder!

 
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Old 11-16-2012, 02:50 AM   #2
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Re: Wegener's Granulomatosis

CoughingStudent, I just read this (sorry so late), so HI and WELCOME!

I'm no doctor (huge understatement) but I'd bet there are other possibilties than Wegener's, which I think is rare and is often (but not always) associated with a positive ANCA. One that comes to mind is Sjogren's syndrome, an autoimmune in which unwanted autoantibodies disrupt tear and saliva production. Have you "test driven" the Sjogren's board?

I had some of the same issues (years of episodic joint pain, fatigue, headaches, weight loss, cystitis in the absence of UTI's, etc.) and was finally dx'ed with lupus. The only reason I mention that is because the autoantibodies my doctors found were Sjogren's-like, anti-Ro and anti-La, which are possible in *both* lupus and Sjogren's. You might check out the lupus board as well.

I'm sorry for your problems, very frustrating for sure! Post again when you have the time, OK? Warm wishes, sincerely, Vee

 
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Old 11-16-2012, 01:10 PM   #3
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Re: Wegener's Granulomatosis

Hi Vee,

Thank you so much for your reply! Yes, I was actually thinking Sjogren's may be a possibility too (as much as I would hate for it to be that). I didn't put this in the original post but I am super thirsty all the time...like someimes I have to stop myself from drinking because I know there is a limit to how much can be consued in an hour. That in conjunction with the dry eyes does point to Sjogren's, and the cough would be from a dry throat right?

Here's my question about lupus. Is it possible to have it without the "butterfly mark"? Like I said, I always just feel kind of sick...but there s never anything wrong with me. I get these odd pains and stuff too. I'm sure you have a lot of info on lupus, so I would appreciate anything you have to say about it!

Thanks again for your response

 
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Old 11-16-2012, 02:59 PM   #4
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Re: Wegener's Granulomatosis

Hi, "Coughing". I don't know if excessive thirst correlates to Sjogren's, I've never read that it does, but it could. But anything that dehydates, like chronic diarhhea, could also cause thirst. Actually, my first thought was of diabetes; but since you've been doctoring a lot, were there abnormal *glucose levels* on your labs? (It's good to get copies of labs, esp. when you're in diagnostic mode.)

How about an ACTION PLAN? These are only ideas. You could touch base with your eye doctor, he who found severe dry eye and corneal inflammation. Ask what those findings conjure to him. Does he want to do more tests on your eyes? Or does he recommend you return to your GP, or to some other specialist? Or maybe go straight to your GP with your eye doctor's findings, for him to move the ball forward, making sure to inform him about your thirst, as well as reiterating your other symptoms.

LUPUS. Yes, it's possible to have lupus without a malar (butterfly) rash. The "sticky posts" (permanent info posts) on the lupus board show the 11 criteria. You generally (not always) must meet 4 or more of the 11 to sustain a dx of lupus, thus it's possible to meet 4 without having a malar rash. Rheumatologists are the specialists for this. You could browse the lupus board for a lot more info.

SJOGREN'S. Eye doctcors can do certain tests: Dry Schirmer's and Bengal Rose Staining. GP's and Rheumatologists can do blood tests like ANA, anti-Ro, and anti-La. But I've read that lip biopsy (ouch!) is the most definitive.

Other thoughts, but again I'm only a dumb patient, so please read in that light! Since dryness and stricture seem to be a theme---eyes, throat, etc.---have your thyroid levels been checked? (Thyroid problems can cause joint pain, fatigue, hoarseness, swallowing problems, etc. Tests are add-ons, meaning not included in standard blood panels.) And I think there are pulmonary (lung) problems other than asthma that can cause some of the same.

Bottom line. I think ANYTHING you try to advance your effort, to shake it up, makes sense, even if you end up going down a "wrong" path. That's really what doctors have to do, actually...? So I encourage you to keep reading, forming questions, and making something NEW happen. I hope you check out those other boards & post more, either on those or here. Sending you encouragement & warm wishes, Vee

 
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Old 11-16-2012, 09:00 PM   #5
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Re: Wegener's Granulomatosis

Vee,

Thanks again for you quick and detailed response!

As far as an action plan, this has been a long work in progress. I am in college, so all of my doctors appointments end up being really spread out (which really stinks). The eye doctor did do a Schirmer test (which showed dry eye), I went back last week and he said they look better but not perfect yet. (I have been putting in eye drops, taking fish oil, and not wearing contacts...I'm assuming that is the cause of the improvement.) I have another appointment next week.

I also have an appointment next week with the GI doctor. In August, I had an endoscopy as well as a Bravo pH probe. Both were normal, although he found a small hernia, which I am assuming came to be as a result of my constant hacking. I would like to talk with him about LPR though, because many of my symptoms seem to match that as well.

I checked out some of the other boards you talked about. I think lupus is definately out, I really don't have many of those symptoms besides the pain and fatigue. Sjogren's symptoms match slightly more...I will definately discuss this with my doctor (I have an appointment with her in a month). Although a lip biopsy does not sound fun at all! It is interesting you mentioned diabetes, that was the first thing I thought of when I started getting thirsty all the time. I got test for it a while ago (like 6 years or something crazy like that) because I have a very hard time controlling my weight too. It came back negative, but maybe it wouldn;t hurt to check again.

I have been tested for thyroid disorders several times. I really feel like many of my symptoms match hypothyroidism (which runs in my family)...but it's always negative. I found an interesting fact online that 80% of people with autoimmune disorders exhibit thyroid symptoms, but only 10% of those people test positive for them. This, of course, leads me to believe that whateve is wrong with me is autoimmune.

None the less, I have a whole bunch of things to discuss with my doctor(s). Again, I really appreciate your replys! (It's nice to have someone to ounce ideas off of and hear a different perspective.)

 
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Old 11-17-2012, 06:11 AM   #6
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Re: Wegener's Granulomatosis

Hi, I see now that you do have a plan in motion (good)!

YOUR GI DR. NEXT WEEK. Your assumption is that coughing caused hernia, but could the opposite be possible, could the hernia be causing your coughing?

MORE ABOUT THAT COUGHING. You said tests have been done for "GERD, Asthma, sinus problems, etc." Were actual lung tests (X-ray, CT scan, etc.) done? I imagine YES, but if not, I'd want them if I were you.

Something called Interstitial Lung Disease (ILD) is seen in several autoimmunes. It can come on so slowly & subtly that it's overlooked for years. Other ILD symptoms can include dry gritty eyes and mild body ache... so of course I thought of your dry eye problem...

DIABETES. You said you were tested 6 years ago, but maybe you have been tested more recently? I think blood chemistry panels include blood glucose, as well as tests for kidney & liver function, etc. But it sure makes sense to ask pointblank. Also to start getting copies of all tests, for your personal files.

AUTOIMMUNE SYMPTOMS. To me, one of the craziest things about autoimmunes, is how hard it is for a patient to "self-identify" with any of them. You can look at symptoms and think, "This one's out, I don't fit the description." But there are problems with that! Maybe you have a single symptom that does fit, but you see a whole list of others, so decide you don't. Also, as patients, we just don't know all the twists & turns of these conditions. So I think a better goal is just to make sure your doctors have considered autoimmunity & actually run any and all tests they deem useful.

(Here's a laugh. I thought I had mild MS plus some unrelated funky skin rash. My rheumatologist found this funny. It was lupus, with a lesser-known rash called SCLE.)

What you said about THYROID makes sense to me, too. People may have symptoms long before labs reveal a problem, I think.

I think you've have some very good questions lined up already & hope you continue lining up your ducks. Let us know how your GI appt. goes next week, good luck! Sending best wishes, Vee

 
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