KathyF
10-30-2013, 08:37 AM
I am just starting this journey and my lack of knowledge regarding this unusual disorder is creating great stress. After two years of ever-increasing, truely odd and often scary symptoms, and visits to various specialists that threw up their hands and said "good luck", I finally found a pulmonologist that believes I have Wegeners. I am waiting for the results of bloodwork and CT scans to see what treatment he feels will be appropriate.
My symptoms began two years ago when I found blood clots in sinus drainage after a sinus infection. I wasn't terribly alarmed as that disappeared as the infection cleared. Shortly after that two unusual problems began. First, my blood pressure started to rise from a typical 100/60 to 140/80...then would drop to 90/55...odd. Then I started having flutters, then a racing heart to the point of nearly losing consciousness. At the same time I was having problems with frequency and amount when going to the bathroom accompanied by pain in the groin. Later my PCP would find blood in the urine as well without infection. Both these sypmtoms were more aggravations for awhile and I didn't see the PCP until the heart problem became scary. They measured my heart rate at 170bpm during one event and diagnosed me with a Supraventricular Tachycardia and put me on blood pressure medication that has worked well until recently. That summer I had an unusual rash on my face crop up. Thought it was Roseacea at first but the pattern did not fit. It last three months then disappeared. Last December 16th I came down with bronchitis (not unusual for me) but the cough was unusually bad. By December 31st I was coughing up bloody mucuous. Figured it would go away in a few days. When it didn't disappear by late in January I went to a pulmonologist and she did a bronchoscopy. Ruled out cancer, bacterial, viral and fungal infections. However she found my lung tissue was friable and inflammed and when she touched it with the scope, blood would flow out of the tissue. She was clueless and diagnosed COPD and GERD. That made no sense to me but I had a gastroenterologist do an endoscope and he found no evidence of GERD. The pulmonologist was lost.
My cough has continued but is very mild, however at first I was tasting blood all day, every day without mucuous. Felt like a vampire. Has anyone experienced this...dry cough with bloody taste? This lasted for over nine months. Now I only taste blood rarely but other symptoms are showing up. I have had blood in my sinus drainage again and more recently a bloody nose for the last four days. I have headaches, dizzyness, ringing in my ears and possible loss of hearing...it's hard to know for sure with all the ringing going on. Also, I have another rash on my face that just started a few days ago.
My heart is a huge concern right now. It has started skipping beats and racing, palpitations and pain in my chest. PCP has increased my meds but that was last week and it may not be enough. Has anyone had this experience and what happened? This could be a separate issue for me as heart disease runs in my family, however the timing and the fact that it is electrical and not mechanical (my genetic problem) worries me. If anyone has any experience with heart involvement, please let me know. BTW, I never smoked, drink only rarely and exercise often and weigh 120 lbs. My mother died at 55 from a heart attack so I have been very cautious.
I know this is long, but if I'm worrying too much, I would love to hear that. Also if anyone has recommendations about WEG specialists in the Oklahoma City area, another please let me know,
Thanks
My symptoms began two years ago when I found blood clots in sinus drainage after a sinus infection. I wasn't terribly alarmed as that disappeared as the infection cleared. Shortly after that two unusual problems began. First, my blood pressure started to rise from a typical 100/60 to 140/80...then would drop to 90/55...odd. Then I started having flutters, then a racing heart to the point of nearly losing consciousness. At the same time I was having problems with frequency and amount when going to the bathroom accompanied by pain in the groin. Later my PCP would find blood in the urine as well without infection. Both these sypmtoms were more aggravations for awhile and I didn't see the PCP until the heart problem became scary. They measured my heart rate at 170bpm during one event and diagnosed me with a Supraventricular Tachycardia and put me on blood pressure medication that has worked well until recently. That summer I had an unusual rash on my face crop up. Thought it was Roseacea at first but the pattern did not fit. It last three months then disappeared. Last December 16th I came down with bronchitis (not unusual for me) but the cough was unusually bad. By December 31st I was coughing up bloody mucuous. Figured it would go away in a few days. When it didn't disappear by late in January I went to a pulmonologist and she did a bronchoscopy. Ruled out cancer, bacterial, viral and fungal infections. However she found my lung tissue was friable and inflammed and when she touched it with the scope, blood would flow out of the tissue. She was clueless and diagnosed COPD and GERD. That made no sense to me but I had a gastroenterologist do an endoscope and he found no evidence of GERD. The pulmonologist was lost.
My cough has continued but is very mild, however at first I was tasting blood all day, every day without mucuous. Felt like a vampire. Has anyone experienced this...dry cough with bloody taste? This lasted for over nine months. Now I only taste blood rarely but other symptoms are showing up. I have had blood in my sinus drainage again and more recently a bloody nose for the last four days. I have headaches, dizzyness, ringing in my ears and possible loss of hearing...it's hard to know for sure with all the ringing going on. Also, I have another rash on my face that just started a few days ago.
My heart is a huge concern right now. It has started skipping beats and racing, palpitations and pain in my chest. PCP has increased my meds but that was last week and it may not be enough. Has anyone had this experience and what happened? This could be a separate issue for me as heart disease runs in my family, however the timing and the fact that it is electrical and not mechanical (my genetic problem) worries me. If anyone has any experience with heart involvement, please let me know. BTW, I never smoked, drink only rarely and exercise often and weigh 120 lbs. My mother died at 55 from a heart attack so I have been very cautious.
I know this is long, but if I'm worrying too much, I would love to hear that. Also if anyone has recommendations about WEG specialists in the Oklahoma City area, another please let me know,
Thanks