New Member... possibly. In need of an expert in the field.

[drz]

My sister has Sjogren's or some kind of similar autoimmune disorder since diagnosis of our autoimmune diseases is often imprecise and difficult to pin down.

I also developed some vision disturbance in my right eye right before my hernia repair. It was dilated and examined and nothing abnormal showed up but vision became dimmer and more cloudy. Sort of like looking through a dirty lens except it is clear according to optometrist who examined me. I have had diabetes for decades and think it might be related to some thing in optic nerve area but need to wait for further exam by regular ophthalmologist who has pix from previous exams to sort it out.

[spiritscript]

My sister has Sjogren's or some kind of similar autoimmune disorder since diagnosis of our autoimmune diseases is often imprecise and difficult to pin down.

I also developed some vision disturbance in my right eye right before my hernia repair. It was dilated and examined and nothing abnormal showed up but vision became dimmer and more cloudy. Sort of like looking through a dirty lens except it is clear according to optometrist who examined me. I have had diabetes for decades and think it might be related to some thing in optic nerve area but need to wait for further exam by regular ophthalmologist who has pix from previous exams to sort it out.

Optic Neuritis is also a part of MS. It is swelling and causes dimmed vision. Also, my eye check up shows as normal but I don't think it is. I also have Sjogrens. I hope your further exam is soon.

[debra]

Spiritscript, hi again... Did you're sjogrens start after the wegeners? Just curious, because I showed signs in the dirt couple years, but then improved on its own? Didn't even have tears, for a couple years... Weird... Nice seeing you! Deb...

[debra]

Dirt! Is first! Man, give me a break!

[Hope003]

I still don't know if it's Wegs. I think Dr. Spiera thinks it is but nothing is conclusive yet. My Anca's were positive then negative and we can't rely on those. The ENT didn't find anything, thank God. Even the eye doc said he doesn't see anything terrible. No active inflammation at that moment but I showed him some pics of my eyes and he called it scleritis, then found the sjogrens. The thing is I developed pleurisy again and feel horrible. I went to my heart doc last week and he said I now have Pericarditis too. He said it's highly uncommon to have both pleurisy and pericarditis at the same time. He told me the docs probably won't be able to DX me because I don't fit into any of their categories but what matters is they treat me for the symptoms I am having at that time. I have to be honest, I felt so much better when he said this. I think for me, I can get caught up with the, what is it? What is it thing! Now I'm just hoping the docs can treat me for some unknown auto-immune and anti-inflammatory process that is clearly going on in my body. Dr. Spiera told me to start Plaqunil two weeks ago and I held off not feeling good about it. Turns out he called me a few days ago and asked if I took it. I said no and he said good. The eye doc thinks something may be wrong with my Retina to hold off. Somehow God still has me smiling and pressing on in all this mess. And I'm very thankful to all of you, who are very encouraging and caring enough to help me!

I have to go for a CT of my lungs to see if anything progressed.
A CT of my brain and an Angiogram of my eyes... I'm wondering what they could possibly test me for next! : )

Thanking God for each of you!

[Pete]

Hi Hope,

(Interesting greeting - rhymes with high hope) For what it's worth, I was diagnosed by a process of elimination. After five days in hospital with symptoms of an ear infection that wasn't responding to conventional treatment, crushing fatigue, loss of appetite, and some odd looking things in my lungs, they did a nasal biopsy and a bronchoscopy to see what was going on. The ENT who did the nasal biopsy found some granulomas that they thought could be GPA, but the sample was too small to be conclusive. After that, though, they had ruled out everything else and had no other dx except GPA. I asked how they would get a conclusive dx and the response was open lung biopsy - meaning another week in the hospital. I elected to start treatment for GPA including 150 mg/day oral cytoxan, 60 mg/day prednisone, bactrim daily. Fortunately, I responded well, as I didn't want to think about what would happen if I didn't respond to this treatment regimen.

I've not had eye involvement with GPA. Had minor kidney involvement 3+ years ago that cleared up with a round of rituximab. The lungs have pretty much healed. The right ear was pretty badly clobbered, and I don't think my eustachian tube on that side works right as I have a bit of popping and gurgling in my ear. (I hear OK with hearing aids.)

The best advice I can give you is what the docs who dxed me said: Take your meds as directed and live your life as fully as you can. Five years in, the advice is working.

Good luck!!

[jlove]

Hi Hope! I just read through your posts. I'm sorry you are having a difficult time figuring out what's going on. I remember being in that spot, where you know something is happening and you just want to put a label on what it is. I went into every test with some anticipation because I felt like I never knew what would show up and what would be noteworthy to my doctors. Let us know what happens with your testing!

I was ANCA negative and wasn't diagnosed for a while because just subglottal stenosis and an orbital pseudotumor alone aren't enough to make a Wegs diagnosis. I remember meeting with my old rheumatologist and expressing immense frustration at my lack of a diagnosis and he basically told me "tough luck, wait for another symptom to develop." I was so mad at him, I didn't make my next appointment and I found another rheumatologist later when my third symptom eventually developed. It sounds like you have some great doctors and you are doing all that you can to take care of yourself and find out what you have. I too hope the end result for you isn't Wegs but, if it is, I can tell you it's a relief either way just to know for sure what you have. I can also be a very impatient person, though, so the waiting game was just not my style. It's different for everyone but we are here for you!

Pete, you reminded me of the song "High Hopes." I consider it good luck every time I hear it now because the last time I heard it performed was when the Phillies won the World Series in 2008.

https://www.youtube.com/watch?v=4VMOkpm3eoA

(Skip to 1:10 for the song, especially if you're a Mets, Brewers, Dodgers, or Rays fan )

[debra]

Hope, good for you, God is still finding ways for you to smile, through all the crap, pretty awesome huh? Hope, don't get to comfortable with the ones who are ruling out wegeners, so much. I allowed this in the beginning, cause its so, what I wanted to hear! But my gut, kept telling me no... Oh, how I wish I had always listened to my gut instinct in life, as it has NEVER failed me, unfortunately I failed it... Hope, the scleritis is the smoking gun, that led me to finding wegeners, thanks to the on call emergency eye doctor, who looked completely horrified, after my exam, when he said, please see you're doctor, because this is autoimmune... Then started my golden eye drops, pred forte every waking hour!!! With a very slow taper, next day repo hour intervals, ect... Saw the eye doctor so much, he had my coffee poured when he saw me getting out of my car, making my way in... So did the er! There so much in the first two years, I actually started going to the other er, cause I was so embarrassed! They made me think I was a hypochondriac. I was not, and am not... Scleritis, is a very rare, very serious eye disease caused by wegeners granulomatosis, this was the headline on medscape, I read back in 2012, and when looking, bingo, every symptom right there... All came on suddenly, and had most by week two, after a minor surgical procedure, an endoscopy... Was there just waiting for a streeso, sorry, stress! To show its very ugly head... Hope, keep on, and I will as well, and keep you're faith... Sorry for typos, but it is me, and something's just don't change... Deb...

[debra]

Jlove, you're posts are amazing, so thank you for that... I hope you keep posting, as all you're posts are very helpful... Thank you, for taking this time to do this... Debra...

[Hope003]

Thank you All!

Thank you Pete, your song, had me cracking up! highhhh hopes, he's got high hopes! Yes I do!

Jlove and Debra, Thank you. The Scleritis started in December. I never had anything like that and the eye doc just said it's inflammation and can be cause by anything.
I'm just resting best I can with the steroids. I feel like the pleurisy is getting better and I'm hoping the pericarditis is too. The Prednisone has me so hyper then crashing hard! I hate these pills but I'm thanking God they do help!