Guest guest Posted August 5, 2006 Report Share Posted August 5, 2006 Bonnie, I was reading about a website called don'tdatehimgirl.com, where women post info about guys that are jerks, etc. Wouldn't it be great if we could have one for doctors? How about moronsidiotsbozosMD.com? I'm sure we'd get sued, but I don't have any money anyway! About the meds, your pharmacy would have records of your prescriptions. Again a good reason to keep your own records. Ramblin' Rose Moderator From: quiltenbe@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: RheumiDate: Wed, 02 Aug 2006 09:02:06 -0400 Tracie, My ophthamologist is basically letting me treat myself at this point with Lotemax, which I have been using on and off for almost 6 yrs. I used to work for him. Once every couple of years I see a uveitis specialist. My pressure has always been fine. I am not a steroid responder in that sense. I did write to Dr. , who has a web site for uveitis. He's from Harvard school of medicine. He feels I should see a ocular immunologist. I may decide to do that. I call my vision more like the snow globe effect. Lots of cells floating in there, also a cataract now from the steroid drops. My doctor is not keen on biopsy of the lacrimal gland. He feels this is sarcoid, always has. My lungs and lymph nodes were my initial reason for diagnosis. I did see a pulmonary specialist. He's even on the specialist web site for sarcoid. He felt it was sarcoid and put me on steroids for 5-6 months. Never took a biopsy, never mentioned one. Felt his diagnosis was the right one. Long story short, he kept giving me drugs, not documenting which ones they were in my chart. I'd call for a refill, nothing there to show what I was taking. Then, they lost my chart. I do not see this doctor anymore for obvious reasons. Like the man, his staff stinks. I know, I'm in health care. I geuss I could call my rheumotologist back, but I am embarassed. I also HATE to admit that I'm at this point. Ever stubborn Swede, that's me. Thank you for your help and info. I really do appreciate it. Bonnie B Re: Rheumi BonnieYou are so right, most of us have been where you are. It is frustrating- at best. I know you want treatment, and I know that you need to have the tests done so that your MD's can know what and how to treat you. As far as the work issue, call the Rheumi back, and explain exactly what you wrote to us about needing extra time to get yourself together, how difficult it is to walk, and the exhaustion, fatigue, and pain that you're experiencing. she needs to know. Ask her to take you off work and put you on short-term disability of 30 days. she can extend it if you need her to. One of the challenges with getting this diagnosis is that they do need to rule out MS, Lupus, Diabetes, neuropathy, the various forms of arthritis (I think I saw where there are around 1000 different types) and these tests will take several months to get done. Let her know that you seriously need her help in getting this done as quickly as possible, and that you feel like you're loosing ground daily. As far as the uveitis-- sarcoidosis is a major cause of uveitis. What your MD is seeing was described to me as "light shining thru a barn roof, where the dust particles can be seen floating in the space between the front of the eye, and the back of the eye." These are white cells- and signify active inflammation. I do hope that the Ophthalmologist is treating you with both Pred forte drops and Homatropine drops to keep the eye dialated, so that you don't end up with "acute glaucoma."This with a raised ACE level is significant for ophthalmic involvement, if you have dry eyes also-- then one of the easiest places to get a biopsy may be the lacrimal glands inside the eyelid. Chances are these glands are enlarged, and that would effect tear production. Do you have any lung involvement, or is your chest xrays clear? This is another quick test that might give them another relatively easy place to get a biopsy via bronchoscopy. Hang in there, and know that you will get the help you need. You have to keep telling yourself this-- and see this as coming true. You deserve to know what is happening, and why- and you deserve the best treatment available. Do take care,TracieNS co-owner/moderator Check out AOL.com today. Breaking news, video search, pictures, email and IM. All on demand. Always Free. Post Classified Ads for FREE!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 Thanks Rose, You are a nut!! Don'tdatehimgirl??eh, what's that all about? BonnieB> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 Rose, I love this idea, but yea your probably right; they'd sue us or have us shot////ConnieRose wrote: Bonnie, I was reading about a website called don'tdatehimgirl.com, where women post info about guys that are jerks, etc. Wouldn't it be great if we could have one for doctors? How about moronsidiotsbozosMD.com? I'm sure we'd get sued, but I don't have any money anyway! About the meds, your pharmacy would have records of your prescriptions. Again a good reason to keep your own records. Ramblin' Rose Moderator From: quiltenbe (AT) aol (DOT) comReply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: RheumiDate: Wed, 02 Aug 2006 09:02:06 -0400 Tracie, My ophthamologist is basically letting me treat myself at this point with Lotemax, which I have been using on and off for almost 6 yrs. I used to work for him. Once every couple of years I see a uveitis specialist. My pressure has always been fine. I am not a steroid responder in that sense. I did write to Dr. , who has a web site for uveitis. He's from Harvard school of medicine. He feels I should see a ocular immunologist. I may decide to do that. I call my vision more like the snow globe effect. Lots of cells floating in there, also a cataract now from the steroid drops. My doctor is not keen on biopsy of the lacrimal gland. He feels this is sarcoid, always has. My lungs and lymph nodes were my initial reason for diagnosis. I did see a pulmonary specialist. He's even on the specialist web site for sarcoid. He felt it was sarcoid and put me on steroids for 5-6 months. Never took a biopsy, never mentioned one. Felt his diagnosis was the right one. Long story short, he kept giving me drugs, not documenting which ones they were in my chart. I'd call for a refill, nothing there to show what I was taking. Then, they lost my chart. I do not see this doctor anymore for obvious reasons. Like the man, his staff stinks. I know, I'm in health care. I geuss I could call my rheumotologist back, but I am embarassed. I also HATE to admit that I'm at this point. Ever stubborn Swede, that's me. Thank you for your help and info. I really do appreciate it. Bonnie B Re: Rheumi BonnieYou are so right, most of us have been where you are. It is frustrating- at best. I know you want treatment, and I know that you need to have the tests done so that your MD's can know what and how to treat you. As far as the work issue, call the Rheumi back, and explain exactly what you wrote to us about needing extra time to get yourself together, how difficult it is to walk, and the exhaustion, fatigue, and pain that you're experiencing. she needs to know. Ask her to take you off work and put you on short-term disability of 30 days. she can extend it if you need her to. One of the challenges with getting this diagnosis is that they do need to rule out MS, Lupus, Diabetes, neuropathy, the various forms of arthritis (I think I saw where there are around 1000 different types) and these tests will take several months to get done. Let her know that you seriously need her help in getting this done as quickly as possible, and that you feel like you're loosing ground daily. As far as the uveitis-- sarcoidosis is a major cause of uveitis. What your MD is seeing was described to me as "light shining thru a barn roof, where the dust particles can be seen floating in the space between the front of the eye, and the back of the eye." These are white cells- and signify active inflammation. I do hope that the Ophthalmologist is treating you with both Pred forte drops and Homatropine drops to keep the eye dialated, so that you don't end up with "acute glaucoma."This with a raised ACE level is significant for ophthalmic involvement, if you have dry eyes also-- then one of the easiest places to get a biopsy may be the lacrimal glands inside the eyelid. Chances are these glands are enlarged, and that would effect tear production. Do you have any lung involvement, or is your chest xrays clear? This is another quick test that might give them another relatively easy place to get a biopsy via bronchoscopy. Hang in there, and know that you will get the help you need. You have to keep telling yourself this-- and see this as coming true. You deserve to know what is happening, and why- and you deserve the best treatment available. Do take care,TracieNS co-owner/moderator Check out AOL.com today. Breaking news, video search, pictures, email and IM. All on demand. Always Free. Post Classified Ads for FREE!! Get your email and more, right on the new Yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 Hey, Bonnie, check it out. Just go to www.dontdatehimgirl.com. It's pretty interesting. The guys can post rebuttals. Ramblin' Rose Moderator From: quiltenbe@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: RheumiDate: Thu, 17 Aug 2006 10:06:18 EDT Thanks Rose, You are a nut!! Don'tdatehimgirl??eh, what's that all about? BonnieB> Get the new Windows Live Messenger! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Rose, You start the site and if you don't get sued, I will add mine; especially on we call Dr. Worthless. Terri G. > Bonnie, I was reading about a website called don'tdatehimgirl.com, where women post info about guys that are jerks, etc. Wouldn't it be great if we could have one for doctors? How about moronsidiotsbozosMD.com? I'm sure we'd get sued, but I don't have any money anyway! > About the meds, your pharmacy would have records of your prescriptions. Again a good reason to keep your own records. > > Ramblin' Rose > Moderator > > > --------------------------------- > From: quiltenbe@... > Reply-To: Neurosarcoidosis > To: Neurosarcoidosis > Subject: Re: Rheumi > Date: Wed, 02 Aug 2006 09:02:06 -0400 > > Tracie, > My ophthamologist is basically letting me treat myself at this point with Lotemax, which I have been using on and off for almost 6 yrs. I used to work for him. Once every couple of years I see a uveitis specialist. My pressure has always been fine. I am not a steroid responder in that sense. I did write to Dr. , who has a web site for uveitis. He's from Harvard school of medicine. He feels I should see a ocular immunologist. I may decide to do that. I call my vision more like the snow globe effect. Lots of cells floating in there, also a cataract now from the steroid drops. My doctor is not keen on biopsy of the lacrimal gland. He feels this is sarcoid, always has. > My lungs and lymph nodes were my initial reason for diagnosis. I did see a pulmonary specialist. He's even on the specialist web site for sarcoid. He felt it was sarcoid and put me on steroids for 5-6 months. Never took a biopsy, never mentioned one. Felt his diagnosis was the right one. Long story short, he kept giving me drugs, not documenting which ones they were in my chart. I'd call for a refill, nothing there to show what I was taking. Then, they lost my chart. I do not see this doctor anymore for obvious reasons. Like the man, his staff stinks. I know, I'm in health care. > I geuss I could call my rheumotologist back, but I am embarassed. I also HATE to admit that I'm at this point. Ever stubborn Swede, that's me. Thank you for your help and info. I really do appreciate it. > Bonnie B > > > > > Re: Rheumi > > Bonnie > > You are so right, most of us have been where you are. It is frustrating- at best. > > I know you want treatment, and I know that you need to have the tests done so that your MD's can know what and how to treat you. > > As far as the work issue, call the Rheumi back, and explain exactly what you wrote to us about needing extra time to get yourself together, how difficult it is to walk, and the exhaustion, fatigue, and pain that you're experiencing. she needs to know. Ask her to take you off work and put you on short-term disability of 30 days. she can extend it if you need her to. > > One of the challenges with getting this diagnosis is that they do need to rule out MS, Lupus, Diabetes, neuropathy, the various forms of arthritis (I think I saw where there are around 1000 different types) and these tests will take several months to get done. > > Let her know that you seriously need her help in getting this done as quickly as possible, and that you feel like you're loosing ground daily. > > As far as the uveitis-- sarcoidosis is a major cause of uveitis. What your MD is seeing was described to me as " light shining thru a barn roof, where the dust particles can be seen floating in the space between the front of the eye, and the back of the eye. " These are white cells- and signify active inflammation. I do hope that the Ophthalmologist is treating you with both Pred forte drops and Homatropine drops to keep the eye dialated, so that you don't end up with " acute glaucoma. " > > This with a raised ACE level is significant for ophthalmic involvement, if you have dry eyes also-- then one of the easiest places to get a biopsy may be the lacrimal glands inside the eyelid. Chances are these glands are enlarged, and that would effect tear production. > > Do you have any lung involvement, or is your chest xrays clear? This is another quick test that might give them another relatively easy place to get a biopsy via bronchoscopy. > > Hang in there, and know that you will get the help you need. You have to keep telling yourself this-- and see this as coming true. You deserve to know what is happening, and why- and you deserve the best treatment available. > > Do take care, > Tracie > NS co-owner/moderator > > > > --------------------------------- > Check out AOL.com today. Breaking news, video search, pictures, email and IM. All on demand. Always Free. > > > > > > > > > > > > --------------------------------- > Post Classified Ads for FREE!! > > > > > --------------------------------- > Get your email and more, right on the new Yahoo.com > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.