Guest guest Posted February 5, 2002 Report Share Posted February 5, 2002 In a message dated 2/5/02 4:42:27 PM Pacific Standard Time, kath1@... writes: << Also does anyone else ever get bruises over their joints? A few weeks ago the knuckles of my thumb and pinky finger of my left hand were stinging and burning and then they bruised. >> Kathleen, yes I do get this. What is it??? LOl I have no idea, but it happens all the time. I too would appreciate any input. Don't know anything about the RP and asthma, sorry, but I'm sure you will be getting some input from others hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2002 Report Share Posted February 5, 2002 Kathleen/Question>>>>>>>> Oh, where to begin??? Kathleen, when I first starting having my weird symptoms in Sept 2000, it came on like sinusitis. Rounds of antibiotics and prednisone didn't take care of it. In October, I developed a dry, hacky, unproductive cough (violent enough that I eventually cracked a rib coughing) and ran a low-grade fever. Then in mid-October I woke up one morning and literally thought someone had left the window open because I could hear birds chirping, but I quickly realized that the sound was coming from my throat/airways! My former PCP started me on asthma inhalers that day and, of course, prednisone. As my weird symptoms progressed, I was referred to a pulmonologist who determined that I had costochondritis (talk about pain) and eventually hospitalized me and ran every conceivable test known to humankind-some even twice. I did test positive for 2 different mycoplasmas and Epstein Barr. However, they weren't sure if the mycoplasmas were chronic (so many recent antibiotic treatments) and thought maybe the E/B was a result of mononucleosis as a kid. I was negative for Wegener's Gran. twice. (By March, though, I had a positive PR-3 antigen in relation to my positive c ANCA., confirming WG). The pulmonologist treated me for asthma while continuing to do pulmonary function tests and volume flow loops and watching them get steadily worse. My new PCP kept reading the pulmonologist's reports and finally said, "I don't know what you have, but he's treating you for asthma and I don't think it's asthma. Let's get a second opinion." The second pulmonologist did a bronchoscopy and by that time I did have floppy airways (trach was the size of a straw). He'd heard of RP in med school, consulted some colleagues and his pulmonologist dad-they all agreed that their choice of bronchoscopists was at Mayo and off I went. My biggest regret is that the first pulmonologist didn't do a bronchoscopy 2 1/2 months earlier. However, he said my airways were so inflamed at that time that he wasn't sure I could have tolerated the procedure. But in 2 1/2 months, the inflammation had done permanent damage and I've had to make some big life-style changes because my expiratory rate is now 21%--just can't get the air out. I'm living life in the slow lane now and praying for a miracle! My cough sounds like a trained seal and when Idaho Judy's jokes are really funny, I need to be forewarned because when I laugh too hard, I start coughing and choking! You should see me sitting at my computer during the day reading these jokes, laughing til I cry and then splashing cold water on my face to stop laughing. What a way to go, huh??? Bronchoscopies aren't really too bad and looking on the inside is the only way to know. I would discuss this with my doc. Maybe you'll be luckier than I was. I've been on Cytoxan for 8 months now and I am really starting to see some improvement in the way I feel and in my ability to breathe better, so I refuse the buy the "permanent damage" stuff. I just won't accept that. I'm going to get better and then get well again. Take care and get moving, girl. Question Well, it's question girl again!! Anyway, here's the deal. I have this really nasty cough and wheeze. I was running a low grade fever of 99.3, for me that is a fever, yesterday. No one has told me yet if my asthma IS asthma or RP. I had a flow loop study done and the pulmonologist said "no floppy airways." So that was good news. This is my question: RP can cause inflammation in the airways like asthma BEFORE they become floppy, right? If that is the case, how do they know if it is RP or asthma, or like they are telling me now, bronchitis? If it is RP that is causing the wheeze, then antibiotics will not help, right? I am already on 30 mg of pred and really don't want more, but I also don't want to hear in a few years, "Oh, now your airways are floppy!" Does this make sense to anyone? I'm not even sure it makes sense to me. LOL! Any help would be appreciated. Also does anyone else ever get bruises over their joints? A few weeks ago the knuckles of my thumb and pinky finger of my left hand were stinging and burning and then they bruised. It was almost like the blood vessels welled-up and then burst over the knuckle. The joints stayed sore for days. Weirdness... Has this happened to anyone else. It has happened before and it was before the pred, so I don't think that's it... Well, that's all the weirdness I can muster for now... Thanks for your patience! Kathleen (Tx)DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2004 Report Share Posted March 9, 2004 Does anyone know why the pancreatic duct would be " not visible? " This is what my MRI report says. I guess that's why the GI doc said the test results were useless. Tammy Quote Link to comment Share on other sites More sharing options...
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