Looking for info

[JanW]

I also had thickening of the cavities which the CT results clearly said were indicative of WG. Have you had a chest CT (looking for possible nodules). Better than an xray.

[Sangye]

emg, I have gone down the road you're on--analyzing my labs, tests, etc... with a fine tooth comb. But you know what I've finally learned? That's why we have Wegs specialists. They do that and they can be trusted to do it. It's good to look at your labs and learn what each test is, but try not to get over-involved in the analysis. I'm sure some of my long-time friends on here are chuckling at me right now since I've really struggled with this.

If you don't have a Wegs doc, you probably can't trust them to do this. (There are exceptions, so don't anyone throw tomatoes at me for saying that.) The Wegs docs at the major centers are brilliant, thorough and unbelievably skilled.

Is there any way you can get to Mayo for an initial evaluation and then Dr Specks can consult with your local doc? That's the best, because you can talk to him directly. Call your state medical assistance and ask what the criteria are for going out of state for specialists. Sometimes they allow it if your local doc says it's necessary.

[Jack]

I'm with Sangye on this. If you are being treated by someone you trust you don't have to be too concerned about the details. At the hospital I attend, they can display the results in graphical form and I do like to look at those occasionally just to see if things are drifting up or down and at what sort of rate. I try not to look too hard since the long term trends (over 20 years worth of results) all tend to show a slow, but steady decline. But I suppose that is true to an extent for otherwise healthy people too.

[drz]

I'm with Sangye on this. If you are being treated by someone you trust you don't have to be too concerned about the details. At the hospital I attend, they can display the results in graphical form and I do like to look at those occasionally just to see if things are drifting up or down and at what sort of rate. I try not to look too hard since the long term trends (over 20 years worth of results) all tend to show a slow, but steady decline. But I suppose that is true to an extent for otherwise healthy people too.

Jack I think they call it normal aging some tests adjust the norms for your age.

[emg]

Right now...TODAY...I dont have a dr I trust AT ALL! Im working on it. My c and p anca were neg no further than I was before.
I did notice my liver function did something unususal....My ast and alt...3 years worth....ast 19, 16, 19 alt 15, 14, 49. this is more than double ALT level but its normal range so dr never mentioned it. (this is a lab from 9/2010...I saw this today and called to ask Drs opinion...NO WORRIES. She didnt even think we should repeat the test to see if it is still high. My alk phos also went (same visits as ast and alt past 3 yrs) 49 66 116...again range is within normal...but Im sorry...something doubling in MY norm seems like worth rechecking. HOW IN THE WORLD THESE PEOPLE REMAIN DRS IS BEYOND ME!!!
Any liver dysfunction issues I should be aware of?

[Hal]

Like others have mentioned, you need to find a doctor you can trust. I was in extreme pain last July. The pain was in my arms and legs, so bad I could barely move. My life-time family doctor did not take my symptoms seriously, and told me he could make the pain in my legs go away by hitting me in the arm, to distract me from the pain in my legs. I knew what I was experiencing was not normal, so I walked out and next day very luckily found another family doctor who took me seriously. We had just started bloodwork, but I deteriorated so fast I ended up going to the ER and getting admitted, and within days had a great Rheumatologist diagnosing me. Even in that short time frame of a few weeks I suffered a lot of internal damage, so really, if you must, try and get attention from the ER to avoid potential damge to your organs or nerves ... at least that way if you are in hospital you get immediate attention from specialists.

I started Cytoxan Sept. 1 and am nearing the end of the six-month treatment. Then the plan is to switch to Imuran for at least two years, and hopefully my body will continue to heal during that time!

Take care.

[lafounk2]

Welcome! I read your story and it sounds so familiar with what my oldest son, Josh, went through. He started with joint pains. One day he'd wake up and elbow hurt, next day knee, next day other knee. It varied day to day. He also had nose issues. The doctors kept saying that Josh had a chronic sinus infection for 3 months. He was put on 4 antibiotics and nothing touched it. He constantly had nose pain and nose bleeds with crustiness. I brought him to 2 ENTs, multiple visits to Peds, and 1 visit to ER and still no resolution. It wasn't until Josh ended up with bloodclot in leg and kidney damage that he was FINALLY diagnosed. DO NOT WASTE ANY TIME if you think you may have Wegener's. I know that if Josh were treated and diagnosed earlier that he would have not ended in such rough shape. THANKFULLY he's doing great now despite having kidney transplant on Dec 15. One other nose, Josh had bloodwork the beginning of his sickness on Jan 19, 2009. His creatinine (kidney function) was 0.8 then. Normal range is 0.8-1.1. By the time Josh ended up in ER with bloodclot, bloodwork showed creatinine was 2.6. Damage happened within 3 months. Wegener's is dangerous if not treated early enough. Please do seek specialist soon. I ended up e-mailing Dr. Specks at Mayo and within a day he e-mailed me back. I'm sure if you e-mail him (you can find his e-mail address under the Mayo Clinic Website) and explain your situation and also provide bloodwork scans, that he'll guide you in the right direction. Please do not waste any time..

Mom of 16yo Joshua,
Kelly

[emg]

OMG! I cant believe your son went through that all so quickly. Ive had symptoms for 3 years...starting very general tho so whatever the prob is with me...so far has been "slow moving"
Im going to email...didnt know I had that option!!

[Sangye]

emg, even if Wegs has been slow moving, it can change literally overnight. You can go from no kidney involvement to total kidney failure in one weekend. Wegs is like a wildfire that can smolder for a long time and then without any warning explode into a major catastrophe. Glad you're gonna email Dr Specks.