Guest guest Posted June 8, 2009 Report Share Posted June 8, 2009 Bonnie, I have both pulmonary sarc (in remission, but with some fibrosis/scarring) and asthma. Usually after I have a cold, even a mild one, I'll get a bad coughing fit that lasts for days, with wheezing that I don't normally have. My sarc doc calls it a reactive airway event (aka asthma) & gives me the short course of steroids, that decreases the dosage every day for 6 days. That takes care of it. If I go to the local hospital & get a chest Xray, they think it's pneumonia & give me antibiotics, which don't help at all. To me the difference between the severe coughing from the asthma & that from the initial attack of sarc is the wheezing. I didn't wheeze from the sarc; peed down my leg with both! So if I've just had a cold, then have the wheezing cough, I ask for the Medrol Dos-pak. Hope this helps. Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: quiltenbe@...Date: Fri, 5 Jun 2009 09:02:06 -0400Subject: Re: Let's have a Roll Call!!! Debbie, Thanks for your kind words. Wouldn't they know if it's Sarc or not?? I mean, what's the difference between the two?? I'm totally new to the asthmathing. Live on Advair, singular, and a rescue inhaler. Plus the prednisone. I am feeling alot better. Just coming off the prednisone, so hopefully I'll stay that way. Bonnie B Let's have a Roll Call!!! Hi everyone, The list is SOOOO quiet! Let's have a Roll Call! We have nearly 600 members now and there is no reason that this list should be quiet. There are many things to discuss, questions to ask, and etc. Let's check in and see how everyone is doing....... ..what is going on in our lives, and how we are feeling..... and etc. Myself, I am just getting over the worst case of flu that I have ever had and my hubby has it also. We have been VERY ill. However, I think we are both going to live........ .for awhile there, I was not sure. :-) In the last two weeks, we have had two granddaughters graduate from High School too. We have been busy. I have had to reschedule my Stress Test and EKG until next week as I was just too ill to do it. It was supposed to be yesterday. My Doctors are very worried about all the swelling in my legs, ankles, and wrists. Tracie is taking a much needed rest away from here for awhile but I am here as well as the other Moderators. If you need help or have questions, please feel free to ask and we will get you some answers. We are all sick, so please be patient. Someone WILL answer your questions. Ok........just jump in here and give us an update on YOU! I am done........ ......who is next???????? ?????? Hugs to all, Darlene NS Co-Owner/Moderator Limited Time Offers: Save big on popular laptops at Dell Mortgage rates drop to record lows. $200,000 for $1,029/mo Fixed. LendingTree® Windows Live™ SkyDrive™: Get 25 GB of free online storage. Get it on your BlackBerry or iPhone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2009 Report Share Posted June 8, 2009 Rose You know, i forgot about the fact that my original cough with sarc was a dry little cough. Not much to write home about, really. So, I guess this just regular old asthma. Still not alot of fun and yes, came on originally with a cold. Now, I have to learn to pay attention to ssuch things and treat them BEFORE I can't breathe, not play catch up.Bonnie B Let's have a Roll Call!!! Hi everyone, The list is SOOOO quiet! Let's have a Roll Call! We have nearly 600 members now and there is no reason that this list should be quiet. There are many things to discuss, questions to ask, and etc. Let's check in and see how everyone is doing....... ..what is going on in our lives, and how we are feeling..... and etc. Myself, I am just getting over the worst case of flu that I have ever had and my hubby has it also. We have been VERY ill. However, I think we are both going to live........ .for awhile there, I was not sure. :-) In the last two weeks, we have had two granddaughters graduate fr om High School too. We have been busy. I have had to reschedule my Stress Test and EKG until next week as I was just too ill to do it. It was supposed to be yesterday. My Doctors are very worried about all the swelling in my legs, ankles, and wrists. Tracie is taking a much needed rest away from here for awhile but I am here as well as the other Moderators. If you need help or have questions, please feel free to ask and we will get you some answers. We are all sick, so please be patient. Someone WILL answer your questions. Ok........just jump in here and give us an update on YOU! I am done........ ......who is next???????? ?????? Hugs to all, Darlene NS Co-Owner/Moderator Limited Time Offers: Save big on popular laptops at Dell Mortgage rates drop to record lows. $200,000 for $1,029/mo Fixed. LendingTree® Windows Live™ SkyDrive™: Get 25 GB of free online storage. Get it on your BlackBerry or iPhone. An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2009 Report Share Posted June 10, 2009 Bonnie, those coughs can be tricky. I was on an ACE-inhibitor for hypertension for years, which gives many people a nagging cough (also affects their ACE test when looking for sarc, despite several doctors telling me it wouldn't matter. My first serum ACE was ZERO, which is abnormal; the lab guy said it meant I was either dead or on an ACE inhibitor. Duh!) Anyway, I digress. So I had that cough, plus I had what was called "cough-variant asthma," meaning I didn't get the wheezing or shortness of breath, just waking up at night choking & feeling like I was drowning. That responded pretty well to Prilosec. But with those two coughs, I didn't pay much attention as it worsened. And 7 years before, when my sarc was first diagnosed after seeing enlarged hilar nodes, and being told it would probably go away on its own, no one ever said, oh, by the way, if you ever develop a bad cough, get it checked out. So I just tried to ignore it, except when I peed in my sneakers or had to leave a patient's room because I couldn't stop coughing. Then two years after losing hearing in both ears & having a Bell's palsy, then severe fatigue & a laundry list of other symptoms, I finally saw a neurologist for tremors & falling over. He diagnosed NS at the first visit, then a couple of visits later I had one of my coughing fits in his office. He asked when I'd last had a chest xray (several years & I'd had a coughing fit in my PCP's office) & said, "You have known sarcoidosis, and with a cough like this, no one's gotten a chest xray?!?" I love that man. So he ordered the cxr, then I had a chest CT, by that time had a collapsed lobe & fibrosis, which has never improved. The cough resolved on Prednisone, but the damage was done. Now, I was a nurse, advanced-practice nurse even, and I did not advocate for myself. Shoot, if I hadn't had a coughing fit in the neurologist's office, who knows when the lung damage would have been detected. So the point of all this is (yes, Ellen DeGeneres, I have a point), pay attention to yourself, don't worry about "bothering" the busy doctor or raising false alarms. Boy, my fingers are worn out; gotta cut out these long messages! Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: quiltenbe@...Date: Mon, 8 Jun 2009 23:04:56 -0400Subject: Re: sarc or asthma Rose You know, i forgot about the fact that my original cough with sarc was a dry little cough. Not much to write home about, really. So, I guess this just regular old asthma. Still not alot of fun and yes, came on originally with a cold. Now, I have to learn to pay attention to ssuch things and treat them BEFORE I can't breathe, not play catch up.Bonnie B Let's have a Roll Call!!! Hi everyone, The list is SOOOO quiet! Let's have a Roll Call! We have nearly 600 members now and there is no reason that this list should be quiet. There are many things to discuss, questions to ask, and etc. Let's check in and see how everyone is doing....... ..what is going on in our lives, and how we are feeling..... and etc. Myself, I am just getting over the worst case of flu that I have ever had and my hubby has it also. We have been VERY ill. However, I think we are both going to live........ .for awhile there, I was not sure. :-) In the last two weeks, we have had two granddaughters graduate fr om High School too. We have been busy. I have had to reschedule my Stress Test and EKG until next week as I was just too ill to do it. It was supposed to be yesterday. My Doctors are very worried about all the swelling in my legs, ankles, and wrists. Tracie is taking a much needed rest away from here for awhile but I am here as well as the other Moderators. If you need help or have questions, please feel free to ask and we will get you some answers. We are all sick, so please be patient. Someone WILL answer your questions. Ok........just jump in here and give us an update on YOU! I am done........ ......who is next???????? ?????? Hugs to all, Darlene NS Co-Owner/Moderator Limited Time Offers: Save big on popular laptops at Dell Mortgage rates drop to record lows. $200,000 for $1,029/mo Fixed. LendingTree® Windows Live™ SkyDrive™: Get 25 GB of free online storage. Get it on your BlackBerry or iPhone. An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps! Hotmail® has ever-growing storage! Don’t worry about storage limits. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2009 Report Share Posted June 10, 2009 Sometimes you just gotta kick a little *ss!.....lol. (hope that doesn't get me trouble....) S. 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV)."No one whose hope is in You will ever be put to shame….Show me Your ways, O LORD, teach me Your paths; guide me in Your truth and teach me, for You are God my Savior, and My hope is in You all day long." Psalm 25:3,4,5 NIV From: quiltenbe (AT) aol (DOT) com <quiltenbe (AT) aol (DOT) com>Subject: Re: Let's have a Roll Call!!!To: Neurosarcoidosis@ yahoogroups. comDate: Thursday, June 4, 2009, 4:46 PM Hi All, I have not been on the boards for a long time. I actually have been doing pretty well. The sarc has been quiet. that being said,I have been very sick the last two months. First with a bad cold that went into chest wall infection. Then, I developed colitis. Then, when I finally got off all the antibiotics, I developed very bad asthma.Never had that before, not like that. Did see the pulmonary nurse practitioner. .So,on steroids, but they think it's asthma, not sarc!!! Ae they right?? Who knows. Now having vision problems with this kind of ghosting visual thing.My ophthamologist doesn't see anything wrong, but is sending me to the retina guy... The practice that I work for has moved to a beautiful new office, we even have a psychiatrist in our office now. And get this,he told me about a patient he has with neurosarc. I never even mentioned it first. So, then I told him that this is a possible diagnosis for me. It's kind of amazing to hear someone who knows of this disease just off the top of his head. I'm sure that you all know what I mean. I do lurk here alot. Just felt that I was doing so well, I didn't have much to share. Best days to you all. Bonnie B Let's have a Roll Call!!! Hi everyone, The list is SOOOO quiet! Let's have a Roll Call! We have nearly 600 members now and there is no reason that this list should be quiet. There are many things to discuss, questions to ask, and etc. Let's check in and see how everyone is doing....... ..what is going on in our lives, and how we are feeling..... and etc. Myself, I am just getting over the worst case of flu that I have ever had and my hubby has it also. We have been VERY ill. However, I think we are both going to live........ .for awhile there, I was not sure. :-) In the last two weeks, we have had two granddaughters graduate fr om High School too. We have been busy. I have had to reschedule my Stress Test and EKG until next week as I was just too ill to do it. It was supposed to be yesterday. My Doctors are very worried about all the swelling in my legs, ankles, and wrists. Tracie is taking a much needed rest away from here for awhile but I am here as well as the other Moderators. If you need help or have questions, please feel free to ask and we will get you some answers. We are all sick, so please be patient. Someone WILL answer your questions. Ok........just jump in here and give us an update on YOU! I am done........ ......who is next???????? ?????? Hugs to all, Darlene NS Co-Owner/Moderator Limited Time Offers: Save big on popular laptops at Dell Mortgage rates drop to record lows. $200,000 for $1,029/mo Fixed. LendingTree® Windows Live™ SkyDrive™: Get 25 GB of free online storage. Get it on your BlackBerry or iPhone. An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps! Hotmail® has ever-growing storage! Don’t worry about storage limits. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2009 Report Share Posted June 11, 2009 Well, Rose, I guess we tend to put it aside, thinking that itt's just a cold or allergies, no biggie.. I'm going to a new pulmonary doctor as of last year and he's pretty spot on. Had two ct scans and they were not too bad, just some nodules that they're watching.The breathing problem that i had this past time was pretty bad,but my pft wasnt bad, so.I guess I'm doing okay. i can relate to the coughing so hard you had to pee... lol!!! You have this disease much worse than I do and I can only imagine how nasty that is on a daily basis. I have the joint/muscle pain and have started taking baclofen for muscle cramps. helps mme alot Really like plaquenil but became allergic. So, thne there's the balance,can't feel my toes thing. I do have some problems with numbness in fingers, thighs. but not bad and not all the time. Have the chronic uveitis in one eye and now as of last week, developed anew problem with my eyes that my ophthamologist is sendingme to the retina guy for, so, more fun... But, all in all,still working, still trying to garden, walk my dogs, clean my house...when I feel like it. Thanks for all that you do for this group. You are a charm. Bonnie B Let's have a Roll Call!!! Hi everyone, The list is SOOOO quiet! Let's have a Roll Call! We have nearly 600 members now and there is no reason that this list should be quiet. There are many things to discuss, questions to ask, and etc. Let's check in and see how everyone is doing....... ..what is going on in our lives, and how we are feeling..... and etc. Myself, I am just getting over the worst case of flu that I have ever had and my hubby has it also. We have been VERY ill. However, I think we are both going to live........ .for awhile there, I was not sure. :-) In the last two weeks, we have had two granddaughters graduate fr om High School too. We have been busy. I have had to reschedule my Stress Test and EKG until next week as I was just too ill to do it. It was supposed to be yesterday. My Doctors are very worried about all the swelling in my legs, ankles, and wrists. Tracie is taking a much needed rest away from here for awhile but I am here as well as the other Moderators. If you need help or have questions, please feel free to ask and we will get you some answers. We are all sick, so please be patient. Someone WILL answer your questions. Ok........just jump in here and give us an update on YOU! I am done........ ......who is next???????? ?????? Hugs to all, Darlene NS Co-Owner/Moderator Limited Time Offers: Save big on popular laptops at Dell Mortgage rates drop to record lows. $200,000 for $1,029/mo Fixed. LendingTree® Windows Live™ SkyDrive™: Get 25 GB of free online storage. Get it on your BlackBerry or iPhone. An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps! Hotmail® has ever-growing storage! Don’t worry about storage limits. Check it out. Dell Deals: Don't miss huge summer savings on popular laptops starting at $449. Quote Link to comment Share on other sites More sharing options...
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