xe2001
05-23-2011, 06:53 AM
Hello to everyone on this forum. I found this site after a doc appointment where he mentioned vasculitis. When I got home, I did some research and feel so strongly that I could have this disease. If anyone would like to let me know their thoughts, I'd really appreciate it, I'm at my wits-end at this point.
A little about my situation...everything that is plaguing me began a little over 1.5 years ago. I'd moved into an apartment and had noticed a musty smell, but didn't think anything of it. It was a garden-level, and thought it was just normal. About a month in, the furnace kicked on for the first time. It was a Saturday, and I was taking a weekend CPR course that day. During the class, I noticed my legs were itching terribly. After the class, I'd gone to my father's house for dinner, and the itching was so persistent. I'd noticed red marks on my skin, but thought it was from all my scratching. Later in the evening, I went to a movie, and the itching moved to my torso and back. I went to the store and got oatmeal bath packs and lotion, and Benadryl caps in an attempt to soothe my skin.
The next morning, I noticed wheals all over my thighs. This scared me to death, so I went to an urgent care, where I was diagnosed with hives. I was placed on a titrating dose of prednisone, and told to take a Zyrtec to control the itching. The prednisone did nothing to control the hives. Benadryl didn't calm the itching, one Zyrtec was worthless. The next day I contacted my PCP, through Kaiser Permanente at the time, and she consulted an allergist. I was told to take two Zyrtec twice daily, Zantac four times daily, and Atarax (hydroxyzine) four times daily. With all of this, the hives finally subsided after about a week. Then I ended up with a terrible cold.
The cold lasted about 4 to 5 days, and after about a week, I noticed it seemed like I'd developed a sinus infection. My doctor placed me on doxycycline (very pointless) for the infection, and it didn't improve. At this point, my insurance had switched, and I was now on my own to find another PCP. I made an appointment to be seen, and the new doc placed me on Flonase, told me to do nasal rinses, and referred me to an ENT. Also, I'd started noticing black spots developing on the walls in my bathroom. I'd asked the doc if any of this could be contributed to mold, and she said absolutely.
The first ENT I went to looked in my nose and said it looked dry and to continue with the rinses. He put me on Veramyst, instead of Flonase. A few weeks later, nothing was resolved, and I'd started having blood come out when I would blow my nose. By this time, I'd fought with my landlord and was released from my lease because I'm absolutely convinced there was a mold issue in the apartment. I moved into my father's house in the meantime. The ENT put me on Avelox, because he was thinking I had a sinus infection. The Avelox provided a temporary fix, my nose wouldn't bleed, and everything seemed ok. Then the blood started again about a month later when I'd blow my nose.
The next vist to the ENT was for a CT scan of my sinuses. He tried to tell me I needed to start allergy shots, since nothing else was really working. I completely disagreed with him, and decided to see a new doctor. The CT scans showed no sinus problems, either.
The new ENT I visited seems much more willing to listen and even mentioned that certain autoimmune disorders often manifest in the nose. He immediately agreed that my problem was not allergy-related. He started out slowly, having me do nasal rinses and use sesame oil in my nose, to rule out a possible dry nose problem. That did nothing to fix my problem. The next appointment, I told him my nose was beginning to hurt along the septum on the right side, where the blood always comes out. He looked in, and found the area immediately. He put me on Bactroban ointment for a week. He said if that didn't fix the problem, I'd need bloodwork and a biopsy done. Well, it didn't work.
I had the bloodwork and biopsy done almost 3 weeks ago. The doc said the blood work came up mildly positive for lupus, but further testing was normal. He's saying that's likely a red herring. All other blood tests (c-Anca, P-Anca, etc) were normal, although I don't know what the actual numbers are at this point. He said the biospy sample showed inflammation of granulation tissue, and nothing else. He had a fungal stain performed with nothing showing up. He then had me use triamcinolone cream in my nose, and I just finished that round this past Friday. My symptoms are coming back, and seem almost worse!
I was sure when I'd stumbled across WG, that I would get the news this is what was going on. I have a chronic runny nose, plenty of fatigue, and nasal sores that won't heal. I don't have any joint pain, and I don't believe my kidneys are involved. I'm wondering if I could possibly have a limited case of WG, and my ENT just didn't recognize it?? I would think blood work would show elevated levels if I had an autoimmune issue going on, but maybe not? I also noticed, just recently, that I have a hard time breathing during physical activity. I play in a softball league, and I'm not in great condition, but I can do ok most of the time. During our first game, I could not seem to catch my breath. I'm 29, and I felt like I was taking so much longer than my teammates of similar age to catch my breath. That concerns me as well. I'm going to hopefully speak to him tomorrow and see what the next step is, and ask him specifically about WG. Any insight or thought is greatly appreciated. I apologize for the long story, but thought all the details might help.
A little about my situation...everything that is plaguing me began a little over 1.5 years ago. I'd moved into an apartment and had noticed a musty smell, but didn't think anything of it. It was a garden-level, and thought it was just normal. About a month in, the furnace kicked on for the first time. It was a Saturday, and I was taking a weekend CPR course that day. During the class, I noticed my legs were itching terribly. After the class, I'd gone to my father's house for dinner, and the itching was so persistent. I'd noticed red marks on my skin, but thought it was from all my scratching. Later in the evening, I went to a movie, and the itching moved to my torso and back. I went to the store and got oatmeal bath packs and lotion, and Benadryl caps in an attempt to soothe my skin.
The next morning, I noticed wheals all over my thighs. This scared me to death, so I went to an urgent care, where I was diagnosed with hives. I was placed on a titrating dose of prednisone, and told to take a Zyrtec to control the itching. The prednisone did nothing to control the hives. Benadryl didn't calm the itching, one Zyrtec was worthless. The next day I contacted my PCP, through Kaiser Permanente at the time, and she consulted an allergist. I was told to take two Zyrtec twice daily, Zantac four times daily, and Atarax (hydroxyzine) four times daily. With all of this, the hives finally subsided after about a week. Then I ended up with a terrible cold.
The cold lasted about 4 to 5 days, and after about a week, I noticed it seemed like I'd developed a sinus infection. My doctor placed me on doxycycline (very pointless) for the infection, and it didn't improve. At this point, my insurance had switched, and I was now on my own to find another PCP. I made an appointment to be seen, and the new doc placed me on Flonase, told me to do nasal rinses, and referred me to an ENT. Also, I'd started noticing black spots developing on the walls in my bathroom. I'd asked the doc if any of this could be contributed to mold, and she said absolutely.
The first ENT I went to looked in my nose and said it looked dry and to continue with the rinses. He put me on Veramyst, instead of Flonase. A few weeks later, nothing was resolved, and I'd started having blood come out when I would blow my nose. By this time, I'd fought with my landlord and was released from my lease because I'm absolutely convinced there was a mold issue in the apartment. I moved into my father's house in the meantime. The ENT put me on Avelox, because he was thinking I had a sinus infection. The Avelox provided a temporary fix, my nose wouldn't bleed, and everything seemed ok. Then the blood started again about a month later when I'd blow my nose.
The next vist to the ENT was for a CT scan of my sinuses. He tried to tell me I needed to start allergy shots, since nothing else was really working. I completely disagreed with him, and decided to see a new doctor. The CT scans showed no sinus problems, either.
The new ENT I visited seems much more willing to listen and even mentioned that certain autoimmune disorders often manifest in the nose. He immediately agreed that my problem was not allergy-related. He started out slowly, having me do nasal rinses and use sesame oil in my nose, to rule out a possible dry nose problem. That did nothing to fix my problem. The next appointment, I told him my nose was beginning to hurt along the septum on the right side, where the blood always comes out. He looked in, and found the area immediately. He put me on Bactroban ointment for a week. He said if that didn't fix the problem, I'd need bloodwork and a biopsy done. Well, it didn't work.
I had the bloodwork and biopsy done almost 3 weeks ago. The doc said the blood work came up mildly positive for lupus, but further testing was normal. He's saying that's likely a red herring. All other blood tests (c-Anca, P-Anca, etc) were normal, although I don't know what the actual numbers are at this point. He said the biospy sample showed inflammation of granulation tissue, and nothing else. He had a fungal stain performed with nothing showing up. He then had me use triamcinolone cream in my nose, and I just finished that round this past Friday. My symptoms are coming back, and seem almost worse!
I was sure when I'd stumbled across WG, that I would get the news this is what was going on. I have a chronic runny nose, plenty of fatigue, and nasal sores that won't heal. I don't have any joint pain, and I don't believe my kidneys are involved. I'm wondering if I could possibly have a limited case of WG, and my ENT just didn't recognize it?? I would think blood work would show elevated levels if I had an autoimmune issue going on, but maybe not? I also noticed, just recently, that I have a hard time breathing during physical activity. I play in a softball league, and I'm not in great condition, but I can do ok most of the time. During our first game, I could not seem to catch my breath. I'm 29, and I felt like I was taking so much longer than my teammates of similar age to catch my breath. That concerns me as well. I'm going to hopefully speak to him tomorrow and see what the next step is, and ask him specifically about WG. Any insight or thought is greatly appreciated. I apologize for the long story, but thought all the details might help.