Hello,
Six months ago I was a completely healthy, never go to the doctor except for the annual check up, active, working mom. Then all of a sudden, I started feeling nausea, weight loss and fatigue. I thought it was viral at first, then maybe that I was pregnant. Finally went to the doctor after about a month and a half of this, while the weight seemed to be just falling off me. He took the wait and see approach, then when I was still losing weight a month later, he sent me to a GI specialist who did a full work up. He treated me for Irritable Bowel (tried tons of pills but none of them alleviated the symptoms) but hee was worried that perhaps the pain and weight loss were due to Bowel Ischaemia, so sent me for CT scan. There was a problem with the contrast dye (I’m allergic to shrimp, so they didn’t give me the dye for some reason), so the test was inconclusive for the Ischaemia. (GI specialist later wondered if the suspected Ischaemia was a sign of Vasculitis.)
The GI specialist and GP were stumped. They kept running blood tests. One came back positive for P-ANCA (Titer 1:1000) and another showed that there was protein spilling from my kidneys. My symptoms started to get more and more strange: Skin rashes, cough, terrible and excruciating flank/abdominal pain (worse than childbirth, if you can believe it), tingling in my neck, tongue and extremities, shortness of breath, difficulty breathing and extreme fatigue. I was so debilitated that I had to go off work.
My GP thought that the signs pointed to a Pauci Immune Systemic Vasculitis (like WG) but wasn’t prepared to make a diagnosis, because he had never seen it before. He referred me to a Rheumatologist and waited patiently for the Rheumatologist appointment. I was really hoping for some kind of a diagnosis. When I got the appointment last week, the Rheumatologist just threw up his hands and said, “I have no idea. I can’t put this together.” And that was it. I was stunned. I told him that if he didn’t know, he had to send me to someone that did. I was desperate for some relief! I had the name of the Vasculitis clinic at Mount Sinai in Toronto and asked him to make a referral for me to go there. He seemed reluctant but said that he would.
See here is where I am. I feel strange about posting here because I don’t have a diagnosis of WG, but I thought maybe if I posted here, I could get your thoughts and experience on how to proceed. I feel like I’m getting worse, and I just don’t even know what to do. I have a family to look after and I can’t even do that. I’m frustrated and even though I’ve always been an incredibly positive person, I feel myself getting really down.
Thank you. I have read many of the posts on this site and you have such spirit and energy despite your struggles and I admire that incredibly.
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