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Oh, so sorry, Elephant! That is so very unfair to you! YOU are the sick one, for pete's sake. Why do you not get to be the patient? Did they come to visit or to "help take care of you"?
Oh, so sorry, Elephant! That is so very unfair to you! YOU are the sick one, for pete's sake. Why do you not get to be the patient? Did they come to visit or to "help take care of you"?
Actually Sangye my Rheumy said it is not a flare and just infections.
I sometimes get a rapid and strong hearbeat - I have one right now. It usually takes hours to go away. Maybe I have to go back on the Ramipril for high blood pressure. My BP the other day was 144/90.
Atenolol will lower your blood pressure and regulate your heartbeat. I can't manage without it - heart goes crazy and I think my time is up!
I was taking Ramapril too until recently, but my pressure was getting too low.
im taking Atenolol and Perindopril which has helped with bp and heartrate too.
i no longer feel as if heart going to burst out of chest or no longer scare hubby !! nearly ended at er in the begginning as we did not know what was happening it was during the night !!
a call to consult and it was sorted
DEE x
Several symptoms you've been experiencing lately sound like Wegs and not repeated infections. (I don't know where that thread is or I'd list them!) You've mentioned a few times that you wonder if it's Wegs. To me, that's usually a good indicator that your intuition knows what's going on but the brain doesn't want to believe it. And the rheumy talks you out of it.Originally Posted by pberggren1
Maybe it's not, but that's been my own experience and something I've seen happen to others on here over and over.
A year ago I felt the Wegs creeping up. My Wegs doc said no, it's the result of being out of condition and the damage from the drugs, etc.... So I let myself be talked into it. The symptoms increased. Then I got "pneumonia" without even having a cold first. They said it's infection. I let myself believe that, too. The symptoms increased. The "pneumonia" was persistent, even through multiple IV antibiotics and a month of mulitple oral antibiotics. They said it's taking longer to resolve because of being immune-compromised. I was beginning to wonder. I started coughing up blood. Still they said it's infection--not enough blood. I coughed up a lot of blood. Nope, can't be Wegs. Besides, all my labs were fine.
I knew it all along and I allowed my fear of going through it again drown out my always-reliable intuition. I hope it's not Wegs causing trouble for you, Phil, but I don't want you losing treatment time if it's a flare going untreated.
Last edited by Sangye; 03-23-2010 at 01:01 AM.
This raises a good question for me, Sangye -- how did the docs make a determination that it was just an infection? Couldn't they have cultured something to know for sure? Sounds like they were going on clinical presentation, which wasn't good enough.
It was tough. I can't blame my Wegs doc for missing it. I wasn't coughing up anything, so no sputum sample. My chest x-ray showed "atypical pneumonia"-- always a confusion-maker. (We're more susceptible to atypical pneumonia, but alveolar hemorrhage also looks like AP) My CT was bad but didn't differentiate between AP or Wegs. I had fevers, chills and sweats-- Wegs does that, infection does that. Extreme fatigue-- same thing. It really was impossible to tell until I started coughing up blood. Even then it wasn't a sure thing because it stopped while on IV antibiotics!
The only way it was finally diagnosed was that the pile of "could be Wegs" symptoms got too big to ignore. My Wegs doc said in a Weggie who's prone to alveolar hemorrhage, ANY blood in the lungs is Wegs.
Much as it pains me to say it, but I can understand misdiagnosis of Wegs. The body simply presents the symptoms of being attacked by an infection and infections are very common whereas Wegs is very rare. It is only when someone starts to show multiple, unrelated "infections" that I would expect a doctor to start asking more questions.
I'm the same way, Jack. Whenever I see attempts at educating doctors to recognize and diagnose Wegs better, I think how on earth? Unless someone comes in with sinus, lungs and kidneys involved, the signs/symptoms can look like many other conditions. If a patient presents with alveolar hemorrhage, there are only a handful of conditions that can cause it. I was lucky to present with that (after a year of excruciating joint pain that would have gone undiagnosed for sure).
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