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Thanks everyone!
went to to my Family Dr today as I had another nose bleed I have had 5 now sence Saturday. anyway they check my nose noted it was very irritated should keep it moist with Vaseline.. then they check my ear as I have like ringing in my ears and like a vertigo feeling.. hard to explain.. that was ok,, she did a chest xray and she said its normal but it did show some spider kind of feelers but the radiologist said its normal , my white blood count is 3.7 little low she said Normal is 4.1-4.9my my hemoglobin is 13.2
It just don''t seam right when I have so many symptoms and when I go to do a test , they come back all right ...I feel I m a hypochondriac but my Family Dr reassures me I m not!!!!!... does anyone else have this happen to them?
I get to the point of not knowing what to do anymore..
I am getting worse sore throat and my voice is getting really raspy.. this scares me with my subglotic stenosis... I do have a cough that is in my chest, maybe that is where my sore throat is coming from.??., constant drainage down the back of my throat I just wish everything was black and white .. Yeah I know Medicine is not black and white- frustrating
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Bren, even a great family doctor will not have the expertise you need. Nose bleeds with Wegs aren't happening because you have a Vaseline-deficiency. When can you get to a major center for proper care?
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Feb 28th in Mayo 2 weeks from today..
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Okay, glad to hear that. I think you told us that already but it's hard to keep up!
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Lab results can often lag behind our symptoms and how we feel. It took awhile for one ER to realize this when my HGB was dropping from bleeding in my lungs for me but after the third visit, they treated me for the symptoms and how I felt and didn't wait for the lab results to catch up with what was going on in my body because they knew what the lab results would be in a few days.
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drz.. what did your chest X-ray look like with the bleeding in your lungs what were some of your symptoms?
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I also have had bleeding my lungs (twice now). My lab work looks great until I'm in the ICU basically.
Even when my lungs were completely filled with blood (all lobes, top to bottom), the chest x-ray only looked a bit of abnormal and resembled atypical pneumonia. The CT however, was horrific. At that time I had extreme difficulty breathing with profound fatigue and weakness. I could only walk about 5 ft without doubling over gasping for breath, as if I'd run a marathon. When my lungs hemorrhaged to a lesser extent in 2009, the chest x-ray looked fine but the CT was awful. I had difficulty breathing, increasing fatigue, night sweats, joint pain and a skin rash.
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I hope they have done the urine tests for kidney function too, they are very simple and should be routine. Renal failure has very few symptoms until it is too late. I speak from personal experience! :sad:
I'm worried about the standard of care you are receiving.
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I'm very concerned about your raspiness with subglottic stenosis (I have that also). SS requires a really close eye, because it can go from mild to severe in no time at all.
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Bren
Prior to my crash and burn in SEptember that almost took my life ..my labs always looked basically ok....elevate liver enzymes were the worst...so don't beat yourself up...I am a nurse and no medicine is not blackand white...it is what it is ...everyone is wired differently and we all react differently...I will be at Mayo in Rochestor on Monday...praying they find something that will work for me...I hate having subglotic stenosis...as Jan has said it can close so fast ..but at times i feel like I am calling the doc all the time...but I would rather be wrong and check then right and ignore it....Just something to think about