Gun Shy?

[OJSRLS]

I've been having a number of medical issues lately. Had what they believe to be a small TIA in Aug.. They did CT and Angiogram with nothing conclusive. Early Dec. in ER again with sever back pain They related it to degenerated disk and not Kidneys. As WG has not shown itself other than the positive ANCA tests and some abnormalities in my eye that are no longer there. I get worried anytime something shows up. Don't know if this is normal with what might be early WG hope I'm not being paranoid. So far I have not shared my possible WG with many of my family as some of them are dealing with stage 4 cancer. Even my wife has not read any articles on Wegener's I think she's probably in denial or oth maybe just overwhelmed by the other illnesses in both our families. I would appreciate any feedback on how WG manifested itself in the early stages. I am licensed EMT so I have some medical knowledge. :confused1:

[Pete]

Hi OJR,

Perhaps the eye issue might be the stronger GPA presentation. Many of us had odd symptoms at onset. I started with an ear infection that wouldn't respond to typical treatment. As things progressed over the next three weeks, my added symptoms were a non-productive cough, crushing fatigue, loss of appetite, and night sweats. While in hospital, I had positive sinus biopsy and bronchoscopy, along with a CT scan that showed evidence of granulomas and cavitations. Didn't have kidney involvement until a few months ago, but some do have it at disease onset.

Sorry to hear of your other family members' illnesses. You do need to look out for yourself. Do you have a doc who's experienced in treating GPA? That may lead to a definitive diagnosis that you need and can discuss with your wife.

Good luck!

[OJSRLS]

I was referred to a specialist in Des Moines IA but right now it's kind of wait and see unless something major shows up. Thanks for your feed back. This is new to me. read on the Prayer Chain at our church there is a lady close by recently diagnosed WG. Hope I can fid a way to contact her.

[annekat]

My onset symptoms were very similar to Pete's, though it took 2.5 years to actually get a diagnosis. When things got really bad just prior to dx, I had a lot of issues around my eyes, including redness, watering, and a general tight feeling with palpable hard spots like swollen veins around them. Oddly, although I mentioned these things, no one, even in the hospital, paid much attention to them, I guess because they were focusing on different things like my lung CT scan and nasal biopsy. The eye issues did clear up fast with treatment, and I apparently did not have serious eye involvement as some people have. Beyond that, I agree with everything Pete said.

[OJSRLS]

Thanks for the info. It was actually the Eye Doctor that ordered the first ANCA test. Saw something in the back of my eye he didn't like. I had to go to the Hospital to get the ANCA test as my Doctors lab didn't know what it was.

[Debbie C]

Hi,glad you found the forum. It is a great place to get advice or just talk. Sorry to hear about all the other illnesses going on in your family. But it is very important to get diagnosed as soon as possible ,so they can get you on the right treatment. Are you getting regular blood and urinalysis done ? The numbers there will tell alot. If you can't find a dr. on your own that has knowledge of wg. you might want to check out the Vasculitsis website. Hope you find out soon what is up and I hope all goes well with the rest of your family during the New Year.

[OJSRLS]

Yes my Rheumatologist and family Dr. are keeping on top of things for now.

[mishb]

Hi OJ, I'm glad your doctors are on top of everything.

I do know of a lady that has WG in her lower back/spine. She does not have any sinus, lung or kidney troubles.

Mine started with a Sinus infection, fluid in my ears (which later on became deafness) and uveitis (red eyes). I already had joint pain from RA, however the new joint pain that came and moved from one joint to the next and felt like a bone was broken or a muscle had snapped off the bone, was worse than the RA pain. Each painful area lasted for 3 days, before disappearing for 2 days and then coming back for a further 3 days, but in a totally different area. I also got many bruises on my arms and legs, which the doctor said was from burst blood vessels.
Of course, these nearly all cleared up as soon as meds were commenced.
After all of the blood tests etc, a sinus biopsy confirmed WG

[annekat]

Funny about the joint pains..... mine never "roved" like that; I'd just get them in the typical places, like both hands, both knees, etc... it was originally thought I could have RA but that tested negative. The joint pains were debilitating at times but never quite as severe as yours sound, Michelle. Just made it very hard for me to get around when it was at its worst, like my legs would not work properly at all and I had to go very slow. It all cleared up quickly with the meds.

[mishb]

Those meds, even though we hate taking them, are wonderful things I'm afraid to say.
- couldn't live without them :unsure:

[annekat]

Those meds, even though we hate taking them, are wonderful things I'm afraid to say.
- couldn't live without them :unsure: Yep, before I even knew I had Wegs I found out how much just 5mg. pred would help my joint pains and got ahold of some on the sly... really couldn't have functioned without it.

[Alysia]

Hi OJSR,
welcome to the forum. I hope for you that you don't have WG, but if you do, then you have us with you all the way. it sounds tough to have all this plus all the other diseases that are now in your family. I am sorry for you and for your family. such stress prob not doing much good to your state.
don't count only on the ANCA test, since it is not conclusive. you can have WG also when ANCA is negative.
good luck and continue to write.

[windchime]

Welcome to a site with a vast amount of information and great people to talk to. I was initially diagnosed in the early 70's. I have received no treatment until recently. My most obvious problem is/was the cavitating nodules in my lungs. They would find them and they would resolve themselves so no treatment. With hindsight I had other systemic issues like muscle and joint pain and some tiredness. At any rate I think this disease can go into spontaneous remission although there are some on here who may disagree. It is the only way I can explain no tx for so many years. My lung biopsy was sent to Mayo for a second opinion and they agreed with the initial diagnosis of Wegener's.

How positive is your ANCA? It sounds like you are in tune with your body so you will recognize when something isn't right. That's the time to let your docs know. Sometimes the wait and watch is the best treatment at the time.

Sorry to hear that you are going through so much stress right now. Having ill family members as well as being ill yourself can be stressful. Make sure you get plenty of rest. Your wife is probably protecting herself right now since there is so much illness around her. When the time is right she will do the research. Try to let her do it in her own time. It sounds as if she is just overwhelmed. Keep us posted on your progress. Feel free to ask any questions and to vent if need be. Best wishes to you and your family.

[Debbie C]

Cindy, that was the same with me and my lungs. I was in an auto accident and they did a ct. scan of my chest and found nodules, and they that I may have lung cancer. Since the 2 needle biopsys didn't get enough to dx. I had to have a partial middle lobectomy which showed wg. My anca kept coming back neg. and my nodules would come and go without treatment so my reumy down here didn't believe I had wg ( even after the biopsy) so I went to CC and they sent him a letter saying that anca was not always a sign.

[windchime]

​Yes I know so much more this time around *sigh*.