Guest guest Posted June 18, 2001 Report Share Posted June 18, 2001 In a message dated 01-06-18 08:49:08 EDT, you write: << I have read so many messages and I feel a lot more informed and empowered than I did by the little pretty pamphlet the doctor gave me. I don't belong to any email groups, so this is different for me, but I felt voyeuristic just reading and not introducing myself. >> Hi , I know what you mean about the subculture...having this group has been a blessing to me, knowing there are other women out there who understand what I'm living with, and who sometimes offer up insights and advice that make things easier. I'm sorry you have fibroids, but I'm glad you found this group. Welcome. :> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2001 Report Share Posted June 18, 2001 In a message dated 01-06-18 08:49:08 EDT, you write: << I have read so many messages and I feel a lot more informed and empowered than I did by the little pretty pamphlet the doctor gave me. I don't belong to any email groups, so this is different for me, but I felt voyeuristic just reading and not introducing myself. >> Hi , I know what you mean about the subculture...having this group has been a blessing to me, knowing there are other women out there who understand what I'm living with, and who sometimes offer up insights and advice that make things easier. I'm sorry you have fibroids, but I'm glad you found this group. Welcome. :> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2001 Report Share Posted June 18, 2001 In a message dated 01-06-18 08:49:08 EDT, you write: << I have read so many messages and I feel a lot more informed and empowered than I did by the little pretty pamphlet the doctor gave me. I don't belong to any email groups, so this is different for me, but I felt voyeuristic just reading and not introducing myself. >> Hi , I know what you mean about the subculture...having this group has been a blessing to me, knowing there are other women out there who understand what I'm living with, and who sometimes offer up insights and advice that make things easier. I'm sorry you have fibroids, but I'm glad you found this group. Welcome. :> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2001 Report Share Posted June 18, 2001 > One thing I've already noticed is that doctors always use the > royal " we " as if they were a hive mind like on Star Trek. What is > that? Dear - Welcome! I would take the " we " as a good sign- it might mean that your doctor is actually thinking about working " with " you on this, unlike so many doctors that might say " You need this... " or " I suggest this... " Although, it might also just be in the three-ring binder on " How to Speak to Your Patients " , but I think the key is that he/she is at least willing to try.... > I have read so many messages and I feel a lot more informed and > empowered than I did by the little pretty pamphlet the doctor gave > me. I would also suggest investing in the book(s) of your choice- while I find the Internet to be a great source of info, it helped me much to read the well organized and more detailed info in the books I got from Amazon.com- sometimes I think the info on the net is a little too general and occasionally confusing and conflicting. If you're dedicated to finding out as much info as you can on your own (which I highly suggest- gone are the days when we could ALWAYS trust our doctors to make the absolute best, objective, caring desicions about our bodies), I think books can help to " put everything together " . Also they're nice to curl up with! I wish you the best in your searching! Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2001 Report Share Posted June 18, 2001 > One thing I've already noticed is that doctors always use the > royal " we " as if they were a hive mind like on Star Trek. What is > that? Dear - Welcome! I would take the " we " as a good sign- it might mean that your doctor is actually thinking about working " with " you on this, unlike so many doctors that might say " You need this... " or " I suggest this... " Although, it might also just be in the three-ring binder on " How to Speak to Your Patients " , but I think the key is that he/she is at least willing to try.... > I have read so many messages and I feel a lot more informed and > empowered than I did by the little pretty pamphlet the doctor gave > me. I would also suggest investing in the book(s) of your choice- while I find the Internet to be a great source of info, it helped me much to read the well organized and more detailed info in the books I got from Amazon.com- sometimes I think the info on the net is a little too general and occasionally confusing and conflicting. If you're dedicated to finding out as much info as you can on your own (which I highly suggest- gone are the days when we could ALWAYS trust our doctors to make the absolute best, objective, caring desicions about our bodies), I think books can help to " put everything together " . Also they're nice to curl up with! I wish you the best in your searching! Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2001 Report Share Posted June 18, 2001 > One thing I've already noticed is that doctors always use the > royal " we " as if they were a hive mind like on Star Trek. What is > that? Dear - Welcome! I would take the " we " as a good sign- it might mean that your doctor is actually thinking about working " with " you on this, unlike so many doctors that might say " You need this... " or " I suggest this... " Although, it might also just be in the three-ring binder on " How to Speak to Your Patients " , but I think the key is that he/she is at least willing to try.... > I have read so many messages and I feel a lot more informed and > empowered than I did by the little pretty pamphlet the doctor gave > me. I would also suggest investing in the book(s) of your choice- while I find the Internet to be a great source of info, it helped me much to read the well organized and more detailed info in the books I got from Amazon.com- sometimes I think the info on the net is a little too general and occasionally confusing and conflicting. If you're dedicated to finding out as much info as you can on your own (which I highly suggest- gone are the days when we could ALWAYS trust our doctors to make the absolute best, objective, caring desicions about our bodies), I think books can help to " put everything together " . Also they're nice to curl up with! I wish you the best in your searching! Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2002 Report Share Posted October 28, 2002 .. You wrote: " I get so tired of hearing the comment " look at those rosey cheeks, you must be so healthy " I just want to explode..so I avoid it. " Hon .. you arent the only one .. sometimes I feel like if one more person says that too me .. I am just going to slap them across the cheeks .. then tell them .. hey .. you got such rosey cheeks .. you must be healthy and not hurt! sheesh .. sometimes people can be ignorant and unwilling to face facts. I tell people that I am like a book .. I have a great dust cover! but the inside of the cover is all crumpled! smiles.. hang in there .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 This is absolutely normal. Not fun, but normal. I have SLE, FM, Raynaud's, Sjogren's, Asthma, and Depression. The depression is secondary to all of my illnesses. Who wouldn't be depressed? Are you on any antidepressant medication? It helps some but only so much. Let's face it - it's not a cure all. We are still sick and are depressed because of what is happening to our bodies and our lives. It seems to be a constant struggle. Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2002 Report Share Posted November 2, 2002 Welcome! I'm still fairly new, too. I have one husband, very supportive who has a birthday on the 8th, (he made me say that :-) Three grown & married kids, 7 grandkids, fortunately, none live here. I was diagnosed in about '85 and have had a lot of problems like anyone else here and not as bad as some. I have found all these folks are wonderful. It's a place I can go to gripe or moan or rejoice. Don't get too overwhelmed by the volumn of mail, though. Read what you can or get the digest version. Glad you're here/ Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2006 Report Share Posted November 27, 2006 Hello Everyone! My name is Amber, I'm 29...and almost newly diagnosed. I had a major episode last year, and have been told that this is the early stages of MS. So far nothing on my MRI's, but my O-bands were positive in my CSF. I'm in the middle of another episode, and am waiting for another round of MRI's, neuro appointments, and med changes. Good times, eh?! They tried maxing me on baclofen...didn't work, so they brought that back down and are trying maxing me on neurontin. I'm still a hurtin', and my muscles are still tight as a drum. Anyone else go through this song and dance? Is my neuro following the right treatments? I haven't started any MS meds (rebif, avonex,etc.) We're supposed to discuss that at my appt. on Dec. 7. Any suggestions? I'm an ICU nurse in a cancer treatment hospital in Philadelphia...I don't want to take anything that makes me too out of it. Thanks for listening, and I hope to hear your suggestions soon. Amber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2006 Report Share Posted November 27, 2006 Thank you Shirley. I'm going to talk with him tomorrow. Amber Re: Newbie Welcome Amber.Get started on an MS med as soon as possible. They have shown positive results on a lot of people. You're going through what I did. No lesions but CSF showed. Back in 2003 they wouldn't put me on an MS med. Now they do if you're showing positive MS signs. Which your neuro will discuss with you.I'm surprised your neuro hasn't put you on steroids. That will quiet a flare pretty quickly. Good luck with it all. I can't take neurontin. I was put on something else, and the name totally escapes me right now. Each person is different.We're here for any question you may have.ShirleyAmber <amber_faith_ rnyahoo (DOT) com> wrote: Hello Everyone!My name is Amber, I'm 29...and almost newly diagnosed. I had a major episode last year, and have been told that this is the early stages of MS. So far nothing on my MRI's, but my O-bands were positive in my CSF. I'm in the middle of another episode, and am waiting for another round of MRI's, neuro appointments, and med changes. Good times, eh?! They tried maxing me on baclofen...didn' t work, so they brought that back down and are trying maxing me on neurontin. I'm still a hurtin', and my muscles are still tight as a drum. Anyone else go through this song and dance? Is my neuro following the right treatments?I haven't started any MS meds (rebif, avonex,etc.) We're supposed to discuss that at my appt. on Dec. 7. Any suggestions? I'm an ICU nurse in a cancer treatment hospital in Philadelphia. ..I don't want to take anything that makes me too out of it.Thanks for listening, and I hope to hear your suggestions soon.Amber Access over 1 million songs - Yahoo! Music Unlimited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2006 Report Share Posted November 28, 2006 Hi Amber, I've been diagnosed since 1984. Go to www.copingandprevailing.com There is a lot that you can do to help yourself WITHOUT drugs. If you cannot afford to pay for the book send me yourmailing address and I'll send it to you. Regards, Tom Newbie Hello Everyone!My name is Amber, I'm 29...and almost newly diagnosed. I had a major episode last year, and have been told that this is the early stages of MS. So far nothing on my MRI's, but my O-bands were positive in my CSF. I'm in the middle of another episode, and am waiting for another round of MRI's, neuro appointments, and med changes. Good times, eh?! They tried maxing me on baclofen...didn't work, so they brought that back down and are trying maxing me on neurontin. I'm still a hurtin', and my muscles are still tight as a drum. Anyone else go through this song and dance? Is my neuro following the right treatments?I haven't started any MS meds (rebif, avonex,etc.) We're supposed to discuss that at my appt. on Dec. 7. Any suggestions? I'm an ICU nurse in a cancer treatment hospital in Philadelphia...I don't want to take anything that makes me too out of it.Thanks for listening, and I hope to hear your suggestions soon.Amber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2006 Report Share Posted November 28, 2006 Hi Amber, I've been diagnosed since 1984. Go to www.copingandprevailing.com There is a lot that you can do to help yourself WITHOUT drugs. If you cannot afford to pay for the book send me yourmailing address and I'll send it to you. Regards, Tom Newbie Hello Everyone!My name is Amber, I'm 29...and almost newly diagnosed. I had a major episode last year, and have been told that this is the early stages of MS. So far nothing on my MRI's, but my O-bands were positive in my CSF. I'm in the middle of another episode, and am waiting for another round of MRI's, neuro appointments, and med changes. Good times, eh?! They tried maxing me on baclofen...didn't work, so they brought that back down and are trying maxing me on neurontin. I'm still a hurtin', and my muscles are still tight as a drum. Anyone else go through this song and dance? Is my neuro following the right treatments?I haven't started any MS meds (rebif, avonex,etc.) We're supposed to discuss that at my appt. on Dec. 7. Any suggestions? I'm an ICU nurse in a cancer treatment hospital in Philadelphia...I don't want to take anything that makes me too out of it.Thanks for listening, and I hope to hear your suggestions soon.Amber Quote Link to comment Share on other sites More sharing options...
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