Here we go again

[OJSRLS]

Here I sit again confused. Since Nov. 15 2015 have had chronic Diarehha. Went to family DR. blood test came back with a Sed. Rate of 86 and CRP of 2.7 said there was infection and inflamation but stool samples came back Neg. Called my Rheumy. he ordered more blood work including ANCA. On Dec. 3, 2015 I developed Vertigo although I'VE had no nausea but am very unsteady when walking. More blood, markers still elevated Sed. dropped to 79. Family Dr. gave me 3 days of Predisone, did help the Vertigo but when it ran out Vertigo returned. Now back on a 1 week decreasing dose of Pred.. Finally saw Rheumy said blood cultures and ANCA were Neg.. He did do lower Abdominal x-ray to check for inflamatory bowel. All things seem to point to a Weg. flare. Have not yet had official diagnosis of Wegs. although I've had more then 1 pos. ANCA keep going from Pos. to Neg.. Could this still be Wegs.? Kind of at a loss. I have an upper and lower GI next Fri. any feedback would be welcomed. Family Dr. said he thinks the Wegs. is there but reluctant to put me through the infusion process if the Rheumy doesn't think it's needed. At least he tried the Ped. Thank you for letting me vent

[Birdie]

Thank you for letting me vent

If that's what you call venting then we need to have a chat. I can teach you about venting, and so can most everyone else here.

But hey, what I get is that you're wondering if you have Wegener's? If you've had positive c-ANCA, then negative, then positive, then it's very likely you have Wegener's. That's bad news but not nearly as bad as having it and not knowing. Also, it sounds like your Wegs, if that's it, is limited onset. So double yipee. You know and it's limited.

I can't quote everything I've learned about c-ANCA because I'm as old as my memory, so terminology I can't recite, but... A small percent of people have a natural c-ANCA level, without being sick in any way known to cause it. If yours has come and gone then that's something I've not heard of happening in those with a natural c-ANCA. Mine was high at first, then tapered, then come and go... now I don't know cause the VA won't test for it.

[debra]

Hi! Please don't let them call it IBS, cause its bull. This is the same as saying,we don't know what the heck is going on,but we have a name for it,let's call it Ibs. This was one of my more mild symptoms along with going down to 89 lbs,and tiredness,back in 2011. Then wow things broke out may 2012 after a routine endoscopy. For those of u out there that deal with this so called ibs,I mean no disrespect to u,but I don't buy it. There is always a bigger reason for why our body's react the way they do... Also could be a more simple thing,like u took an antibiotic and it depleted out the good guys we need to digest food,ect. There's a great probiotic out there called vsl #3 that the pharmacist keeps in his fridge behind the counter. Some insurance covers this also. My point,please don't let them call it ibs and brush it off. Our body's are smart,they know what's up..... Best to u..... Deb.

[Alysia]

Hi. Calprotectin test https://en.m.wikipedia.org/wiki/Faecal_calprotectin can help to find if its IBS or IBD. Mine was strongly positive, means that I have colon involvement of wg. Dont allow them to give you peroxide as preparation for the endoscopy. Read here: http://www.wegeners-granulomatosis.com/forum/hospitals-clinics-doctors-nurses/3942-careful-when-being-treated-hospital-emergency-rooms.html
Anca can be negative even if in a flare.

[txrepub4God]

"Family Dr. said he thinks the Wegs. is there but reluctant to put me through the infusion process if the Rheumy doesn't think it's needed." This kind of thinking from a specialist is what caused me to go two entire years with every one of the specialists I saw pretty much agreeing I had Wegs, but no one was really wanting to start treatment for it until they biopsied something and knew for SURE. And in that two years of tests, tests, tests, more tests, more specialists, losing health insurance for a year and not seeing anyone at all.....my health got so horrid that I have no idea how I lived other than God was not ready for me yet. It's funny - about 2 1/2 years ago I started studying my own blood tests for the past few years, started researching the results on the internet, and I'm the one that found the whole "Wegeners or Churg-Strauss Syndrome" link. I'm the one that asked my nephrologist at the time in March 2013 to test me for the Churg-Strauss....so he did and the ANCA panel came back negative on the pANCA and cANCA, but it was off the charts abnormal for the PR3s (Wegs) and even the MPO was off the charts abnormal (could have been Crohn's).

The nephrologist contacted a pathologist friend of his, who took a look at my test results. The pathologist agreed - I had Wegeners. So my kidney doctor started me on Cytoxan and prednisone....and then one month later he second-guessed himself and took me off all the medications. He said the same freakin' thing yours did, "I don't want you to be taking these strong medications for the Wegs if it turns out you don't have it. Since you already have chronic kidney failure, I don't want you taking medications that will ruin what is left of your kidney function." So even though I begged him not to and I was bawling my eyes out, he took me off all the Wegs treatment meds and that was that. He never sent me for any other testing or biopsy or to another specialist - nothing. I had to finally contact my primary care doctor, he sent me to a university-based teaching/research hospital, and after months of seeing specialists there, they did a biopsy and found? Guess what? WEGENERS!!! I have had ANCA panels run probably 5 different times, and they have all been negative except I had a positive cANCA in December 2014. My PR3s are always abnormally high, and my MPOs are sometimes abnormally high.

Stay on your specialists' cases, or find a new one. Don't let these people push you away and not treat you. It's your life and you have to fight for yourself.

[Middlesista]

OJSRLS - how are you doing?

[OJSRLS]

Will find out more on 12/29/15 have app. with Dr. that did upper and lower said biopsies shwed no Cancer but still needed to talk with me. Back on 10 days of Prednisone. Thanks for concern.