need advice please........

[dotbill]

Let me start by saying I have been in remission from WG for 17 years!! Which leads me to this, I was just released from the hospital on Monday due to shortness of breath, ? asthma, ? bronchitis, ? pneumonia. My family doctor believes it is not a WG flare up due to chest X-rays being normal. Here is the problem the doctor covering him for the weekend ordered a CT scan and the sub doctor believes WG maybe flaring up. I do see my specialist for WG next Friday but I am trying so hard to put this big brave front on in front of my husband, family and friends. I am hoping noone minds if I come here and voice some of my worries and maybe ask for a shoulder to cry on? Thank-you and I look forward to getting to know people better.

[delorisdoe]

The ct scan is much more reliable. My weg doctor and pulmonologist thought i had pneumonia and not a flare but the radiologist who read the ct scan said probable wegeners flare due to location etc. Family doctors really dont know. I was in remission for aprox 7 years. It is confusing trying to figure out if it is back isnt it? I also try not to let my family esp husband know anything is going on. He usualy figures it out when I leave my prednisone lying around or I have to do one too many 24 hour urine collections.

[Sangye]

Hi dotbill, welcome to the group! 17 years-- WOW! Reading that will give a lot of people hope. Please know that you are welcome to post any questions, concerns, worries, etc.... We're all in the same boat.

I agree with Leigh that the CT is more reliable. My x-rays always look okay when the CT looks disastrous. How is your blood work, especially ESR and CRP? Hopefully someone has done a urinalysis also to make sure your kidneys are fine. These are things that should be done while you're waiting to see your Wegs doc.

[jola57]

I assume you had wegs in the lungs 17 years ago (WOW YOU GIVE US ALL HOPE) so a CT and thourough blood test is amust to say that you are flaring. Wait for the CT scan and ask for the blood test if you have not had one

[Rini]

this sounds like such a good thing tho, so long a break! I feel like when my family is sick & they hide it it is just scarier. I also feel like I don't want them 2 know when I am sick because they get so worried. In the end it is hard to deal with what you don't know, if they know you are sick but it is not bad yet then things are not so bad?

[drz]

I think it is good to be worried when you suddenly have some new or strange symptoms. Ignoring or denying warning signs can be very dangerous or even fatal for some health issues.

What symptoms did you have years ago? Shortness of breath can have many causes but if it is new it needs to be checked out out. I agree that you need lab work and evaluation and check for many symptoms to find out what is happening.

It is amazing that you were able to get such a long term remission and that suggests you have had a great response to treatment and hopefully will do so again for whatever your current issue happens to be.

[Rini]

It is not paranoid if there have been problems before