Still wondering?

[OJSRLS]

My story began in Oct. 20012 with an eye infection. The Eye Doctor saw something he didn't like and ordered blood test one of which was an ANCA that came back positive. Since that time I have had 2 additional positive and 2 negative Anca test. At this time I have no symptoms other than a constant burning in my sinuses with no bloody discharge a CT showed normal. The Drs. at this time will not positively confirm Wegeners but are highly suspicious although they say it's unlikely to have "3" false positives. Has anyone else had this type of experience? Because of a recent episode I have had a CT for a possible TIA and an Angiogram for possible blockage. I would appreciate any feedback. Do I have WG and am just waiting for it to rear it's ugly head or is something else going on?

[Dirty Don]

Welcome 'letters too many for me to type' to THE club of clubs...sheesh! I have never had very high/bad numbers except at the very beginning. Doc may be right in that it is unlikely to have that many false positives. Also, the only really effective way to tell if you have WG is to get a sample of an active spot of WG...that's usually a sinus or lung surgical invasion (LOL...really?!). Anyway, hope you get to the bottom of it soon...if it is WG you don't want it exploding on you...best of luck.

[Woodsyartist]

I too have not been diagnosed, due to no apparent hot spots to biopsy. My ANCA is elevated, and was about the same with the recheck. Symptoms consistent with breathing issues and fatigue, but it is difficult for any of the medical people to feel confident in doing an invasive biopsy....I am uncomfortable...but not down and out. They are still checking to see that it is "nothing else".

[drz]

I too have not been diagnosed, due to no apparent hot spots to biopsy. My ANCA is elevated, and was about the same with the recheck. Symptoms consistent with breathing issues and fatigue, but it is difficult for any of the medical people to feel confident in doing an invasive biopsy....I am uncomfortable...but not down and out. They are still checking to see that it is "nothing else".

Unfortunately that is often how the diagnosis for GPA is eventually determined, rule out everything else first, then try confirm it with a biopsy.

[mishb]

I too have not been diagnosed, due to no apparent hot spots to biopsy. My ANCA is elevated, and was about the same with the recheck. Symptoms consistent with breathing issues and fatigue, but it is difficult for any of the medical people to feel confident in doing an invasive biopsy....I am uncomfortable...but not down and out. They are still checking to see that it is "nothing else".


I didn't find the biopsy uncomfortable at all, really.

Just as drz said, unfortunately that is how I was also finally diagnosed. I think this is the best way for you too.

Diagnosed initially via high ANCA in Aug 2010, waited 3 months for first specialist appointment and then another three months to be confirmed in Feb 2011 by sinus biopsy.

Welcome to the forum OJSRLS - I have you get your answers quickly.

[annekat]

Welcome to the forum. This is the right place to be if you may have WG. It is indispensable to me and probably to many others, and a great group of people. The best.

Since you have eye issues and a burning in your sinuses, I would push for a nasal biopsy. This worked for me, provided a dx, and although a little uncomfortable, was not a big deal and could be done on the spot in the ENT's examining room. No discharge doesn't mean there isn't something in there, maybe being held back by swelling or whatnot. You could try the Neilmed nasal rinses that a lot of us do, if you don't already, or some other form of nasal irrigation such as a Neti pot or other brands of sinus rinses. That would help loosen up whatever is in there. Sometimes it takes multiple rinses to get much of anything out.

I also had eye issue like redness, tightness, and watering, maybe not an out and out infection, but in any case, they seemed related and connected to the sinus stuff. Eye rinses like Bausch and Lomb or cheaper store brands are helpful, too. No one paid much attention to my eye stuff, so I dealt with it on my own, and it went away with proper treatment for WG.

Good luck, and keep us posted.

[Alysia]

Hi,
welcome to the Forum.
as far as I know, and from what I investigated at the onset of my wg, positive anca exist only in wg and in crohns disease. but I am not sure, so plesase ,anyone, corect me if I wrong.

[pberggren1]

Do you have Crohns Alysia?

[Alysia]

Do you have Crohns Alysia?

Hi Phil,
thanks for asking. I don't think I have Crohn. my symptoms are different. although it is rare to have colon involvment in WG I just found 3 others with it: Rose here in the forum, and 2 others on fb. btw, my GI doc said that in colonscopy, what is seen in crohn and in WG is similar: in both cases they find granulomas, and can't tell the difference. he also said that the treatment is the same.

[OJSRLS]

Thank You for the info although I have no symptoms of chrons in 2006 I had to have 18" of my colon remove due to diverticulitis. I have since had 2 colonscopy that came back normal but they probably were not looking for Wegeners. Will have to talk to Dr.

[Alysia]

Thank You for the info although I have no symptoms of chrons in 2006 I had to have 18" of my colon remove due to diverticulitis. I have since had 2 colonscopy that came back normal but they probably were not looking for Wegeners. Will have to talk to Dr.

the pathologist has to search for granuloma in the biopsy. I also read that sometimes biopsies are false negative because the pathologist is not skilled enough.