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Old 08-29-2004, 08:58 AM   #1
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kellykay HB User
My update

seeing as we are on the last page of thoses threads i thought i would my update this way..
earlier this spring i tested positive for C-ANCA and was sent to an immunologist at the teaching hospital here in ontario
he didn't feel that i had wegeners in light that i was not as sick as he thought i should be.. he reran the tests.. did allergy testing. and stratched his head.. he had found a polyp and chronic sinusitis. no allergies
the blood work was negative for both p and c anca.. only reading a one.
he had put me on a nasal spray.. atfer six weeks.. the polyp is almost gone but my sinusitis is worse..and i had a couple of fingers swell up ..
What i didn't know was that atfer two years of negative ana. i had a positive reading.. which i understand changes everything.. he ran a whole lot of other tests.. he never said the word lupus but i got that impression. told me he neeeds to see one of my skin rashes.. and he put me on an anti inflamm for my joints. and something to help my breathing..opens up the airways.. i was having a terrible time breathing at night and this is really helping..
seeing as sinusitis is a sypmtom of wegeners' i am stil worried. but we'll see what happens next time i go... i am feeling like i am getting some good care now.. it was like he took me serious now.. so i suddenly feel numb. i had talked myself out of lupus and had never prepared myself for a positive ana.. i went to my gp because six weeks was too long to wait to find out my blood work results..gp never told me that the ana was positive. apparently it was bordline ..and i remember her comment.now. lets see what the immunologist has to say.. so i guess she didn't want to tell me in case he never felt it was important.. but he said

in light of your clinical presentation ..this is a positive read.usually we want it to be higher here.but for you it is definetly positive.. and he asked for a double even if the ana is negative.. so the ball is rolling again.. as i was saying.. all around the mulberry bush LOL and back again

 
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Old 08-30-2004, 09:43 PM   #2
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Re: My update

Hi, Kellykay,

It was great hearing from you, but I'm sorry to hear that you are still having so many problems. I do hope and pray that you really don't have Wegener's; did you just have one c-ANCA test that was positive, and one that was negative? Maybe you should have one more done, as a "tiebreaker", if you are still concerned about it.

I did a little reading online about the test. False positives are fairly common. I assume your kidney function tests have been normal. There does seem to be a fairly wide consensus among specialists considering a dx of Wegener's that a biopsy of affected tissues is necessary to make the final dx, rather than just relying on a positive c-ANCA -- even in patients in an "active" phase of the disease.

Am I correct that you are waiting for the results of a repeat ANA and an anti-ds ANA? I hope you don't have to wait too long for some answers.

I know how frustrating this process is. Sometimes I feel that I am more distressed about not having an "official" diagnosis for many of my symptoms than with being so sick!

Best,
Pat

 
Old 09-21-2004, 10:35 PM   #3
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Re: My update

Kellykay, it's good to hear from you. Hoping you get some relief especially with the breathing.

 
Old 09-22-2004, 11:12 AM   #4
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Lightbulb Re: My update

Hi KellyKay, I usually check out the lupus board since I was originally "tentatively" diagnosed with lupus. I noticed Wegener's Granulomatosis in your post and became interested as I was told I also have 'symptoms' of WG although my bloodwork is not positive for either lupus or WG (negative ANCA but it was only tested once). I notice you talked about sinus problems. I'm wondering if you have developed "saddle nose deformity???" ('bump' on bridge of nose which is perforation of nasal cavity). I developed this about 3 years ago and was told what it was but I have yet to see an Ear, Nose and Throat doctor for biopsy. The "bump" is sore and tender. I had a brain MRI that showed "thickening of sinuses," which was another possible indication of WG. I also have ear pain (not earACHE, my ears hurt--also have red rashes on ears). That is sort of ignorant to say one is not "sick enough" to have WG as like lupus, it can develop very graduallly or have rapid, life-threatening onset. Well, that's all. Thanks for listening and I hope I 'helped' by telling some of my story! wanalee

 
Old 10-05-2004, 07:00 PM   #5
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Re: My update

ok further update my computer was down and out,
i had a recent bordline positve ana of 1 80 twice and my sed rate has tripled
but according to the immunologist i have no thing major wrong with me

i am still having sinus problems and i am going to have a ct scan done on them. i am on singlair which seems to be helping with my headaches.. and my shortness of breathe..
i am getting my gp to refer me to a rheume now.. she wasn't that happy.
this doctor ingored half of what i told him. told me not to waste my time looking for something more serious .. can you beleive.. and he tried to play the depression card too told me to excerise me.. it is very fustrating so NOT we are in the same boat..
my nose is slowly changing shape looks like i broke it. but i am told it is not saddle nose.. yet.. well see so i am at a loss... oh and now i have polyps in both nostrils!! i give up for now. i pray they figure it out and not when i am so sick .
am going to ask the gp to retest the anca .. see what happens.

 
Old 10-05-2004, 09:46 PM   #6
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Re: My update

Wow, Kellykay!

I am glad that you are getting a referral to another rheumie. That is at least hopeful. Hopefully, you won't get dealt the same deck of cards...so to speak..but someone who will commit to looking further into the cause of your symptoms.

Hugs! Cal Sun

 
Old 10-06-2004, 07:41 PM   #7
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Re: My update

Hi there!!
I just went for my first time to a Rheumy today. I loved her!! What I did to find a good one was to type up my complete history with all of my symptoms, starting back from High School, which is 20 years ago! I included it all because that was my first attack of bursitis in my knee, and some other things as well. I listed all the meds I take and cannot take. I listed all the Dr's I have gone to, and what I expect from a Dr. Most inparticular, someone NOT to tell me it is all in my head, I don't have pain, and I must learn to live with it. I took it to my Orthopedic Appointment from a referral from my GP. He told me he thought I should see a Rheumy, which I actually requested. He was careful in who he suggested, knowing so from what I told him I expected. I lucked out!!! So now, for the last year of as you say, going around the mulberry bush, I too am hoping and praying it works out well!! A definite 'fact' in my case is I came across all male Dr's who literally blew me off, and the Ortho man told me so!!!! Unfortunately, for auto-immune diseases, us women do go thru hell. I am hoping and praying for you as well that your new Rheumy helps you completely!! Good luck!!
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Laurie here!!

 
Old 11-13-2004, 10:52 AM   #8
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Re: My update

Quote:
Originally Posted by NOTSONUTSO
Hi KellyKay, I usually check out the lupus board since I was originally "tentatively" diagnosed with lupus. I noticed Wegener's Granulomatosis in your post and became interested as I was told I also have 'symptoms' of WG although my bloodwork is not positive for either lupus or WG (negative ANCA but it was only tested once). I notice you talked about sinus problems. I'm wondering if you have developed "saddle nose deformity???" ('bump' on bridge of nose which is perforation of nasal cavity). I developed this about 3 years ago and was told what it was but I have yet to see an Ear, Nose and Throat doctor for biopsy. The "bump" is sore and tender. I had a brain MRI that showed "thickening of sinuses," which was another possible indication of WG. I also have ear pain (not earACHE, my ears hurt--also have red rashes on ears). That is sort of ignorant to say one is not "sick enough" to have WG as like lupus, it can develop very graduallly or have rapid, life-threatening onset. Well, that's all. Thanks for listening and I hope I 'helped' by telling some of my story! wanalee

Hi,
I LOVE your nick! I think all of us who suffer from "doctor dissing" should have one just like it, that we insist to be called when in their offices, LOL.

Have you been tested for Sarcoidosis? It has many symptoms similar to Wegener's (which I also thought I had when I started researching all my symptoms - however, I was sick, but not "that" sick.) Sarcoidosis often affects the nasal passages. I have had two or three long lasting sarcoid lesions in my nose, one of which had to be surgically removed. Inflammation of the entire naso-bronchial passageway is also frequent. Rashes and lumps on the skin from the sarcoid lesions are also common. It is worth looking into,
especially if you have any lesions, because a simple biopsy of a lesion can diagnose it.
__________________

["A merry heart doeth good like a medicine."]

 
Old 11-14-2004, 04:23 AM   #9
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Re: My update

For about the last 10 years I have suffered from nasal problems of some sort. I used to have sinus infections and laryngitis ALL the time. On my MRI, it did show some damage in my nasal areas as well. Worth looking into for help on possible Sarcoidosis.
Good luck!
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Laurie here!!

 
Old 11-14-2004, 07:32 AM   #10
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kellykay HB User
Re: My update

the possiblity for me has also crossed my mind.. but i am presently dealing with ovarain cysts right now.. one that is complex and large..
so my plate is full
i am having a ct scan in two for my sinuses and i am hoping that will shed somelight on my sinusitis issues..

i have been tested for wegener;s one positive one negative. i want them to do the test again.. something is not right.. i have been on nasonex and singilaur for a while and i am getting worse agian it seemed to help in the beggining but not now..
time will tell.. how much time i don't know!!??

 
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