 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Lupus / February 2009Is it just me?
Is it just me or is the discussion of lupus not popular here anymore? Actually, there is little posted on lupus at all. Is there another site that I don't know about? I miss hearing from everyone, even the silliness. It lets me know you are out there. I see lots of nasty fighting about iron and those who discuss it and it seems to give opportunity to some to test their vulgarity vocabulary both in the titles and responses. Maybe it has some therapeutic value in letting them vent their frustrations. Oh well........ Anyhow, you are missed! How is everyone doing? George > Is it just me or is the discussion of lupus not popular here anymore? The spam may have driven all regulars out. I wouldnt know as i am a relative newbie here. It;s been about like this since my first post. > How is everyone doing? Test results due 19FEB to see if it's Lupus or not. Doc gave me some cream for the face rash that he said if it was Rosecea, would make a dramatic change. No change at all noted in 4 weeks of use now. "George Parton" wrote >> Is it just me or is the discussion of lupus not popular >>here anymore? It is not just you George! The regular group is gone for good I fear... and it is a shame for the newly diagnosed lupus patients and their families who may have some questions! I don't see all the fighting going on as I block all iron-fool and his cronies <anyone who responds more than twice to him> as they just keep him going. I too enjoyed reading about everyone's news and how they were doing... made me feel part of something much bigger than just my corner of the world... but it is over I think.... a shame! "cshenk" wrote in message > Doc gave me some cream for the face rash that he said if it was Rosecea, > would >make a dramatic change. No change at all noted in 4 weeks of use > now. Too bad the treatment isn't working ... makes me think that probably the dx of Rosacea is not correct ... perhaps more likely a discoid rash, perhaps lupus, rather than that. Good luck with your doctor and go back and talk about the lack of success with the ointment... see if there is something else to be done or someone else you can see for a more likely and helpful treatment!? My hugs to you both, Shelagh Lupus - Invisible In Plain Sight @ http://members.shaw.ca/systemiclupus > "George Parton" wrote >> Doc gave me some cream for the face rash that he said if it was Rosecea, >> would >make a dramatic change. No change at all noted in 4 weeks of use [quoted text clipped - 3 lines] > dx of Rosacea is not correct ... perhaps more likely a discoid rash, > perhaps lupus, rather than that. Not sure yet, he said it wouldnt hurt while tests were run to see if it's lupus, to use the ointment and i am sure he's right. Harmless. > Good luck with your doctor and go back and talk about the lack of success > with the ointment... see if there is something else to be done or someone > else you can see for a more likely and helpful treatment!? I'm in the starting stages of identification and no one is really sure if it's Lupus or not, and if so, it may well be early stages so harder to identify. Some symptoms i have but milder. I get tired for no reason but seem a lesser level of that than the 'real lupus' folks. Early stages? Get sick starting feeling alot but there's no way to prove it. Just happens randomly about every 3 weeks or so (may go 6 weeks, may go 4 days). Like the flu but never happens. Joint pain but doc seems to look and say it's not the same sort. Joint ills as in breaking down (3 herniated discs, 1 abnormal knne, 2 abromal ankles, 1 elbow, and 2 wrists). with no exterior visible sign or swelling. Then again, I have broken my wrist in 5 places at once with no swelling so for me, that indicates little. Hair loss and weak nails. Dunno. I'm hoping we at least resolve it so I know what is wrong. That something is wrong, is obvious. It's also getting worse fairly fast. In message <pq7kl.3708$I93.1170@newsfe18.iad>, cshenk <cshenk1@cox.net> wrote [] >I'm in the starting stages of identification and no one is really sure if >it's Lupus or not, and if so, it may well be early stages so harder to [quoted text clipped - 18 lines] >Dunno. I'm hoping we at least resolve it so I know what is wrong. That >something is wrong, is obvious. It's also getting worse fairly fast. (Me not doctor...) Certainly consistent with lupus. However all this bone-breaking is unusual. Osteoporosis? (Yup, you can have 2 diseases at once)  SignatureAndy Taylor [Chair, N E Lupus Group]. <URL:http://www.northeastlupus.org.uk> >>I'm in the starting stages of identification and no one is really sure if >>it's Lupus or not, and if so, it may well be early stages so harder to >>identify. >>Joint ills as in breaking down (3 herniated discs, 1 abnormal knee joint, >>2 >>abnormal ankles, 1 elbow, and 2 wrists). with no exterior visible sign or >>swelling. Then again, I have broken my wrist in 5 places at once with no >>swelling so for me, that indicates little. (The broken wrist was a fall on snow when I was 21, am 48 now). > Certainly consistent with lupus. However all this bone-breaking is > unusual. Osteoporosis? (Yup, you can have 2 diseases at once) Osteoporosis ruled out. It's the joint softer tissue where the issues are. >Is it just me or is the discussion of lupus not popular here anymore? >Actually, there is little posted on lupus at all. Is there another >site that I don't know about? If so, I don't know about it either! >I miss hearing from everyone, even the silliness. It lets me know you >are out there. > >I see lots of nasty fighting about iron and those who discuss it I wonder if a group for iron-protagonists could be created? Unmoderated, of course. The title would need to make clear that it is not concerned with the smoothing of clothes. My news server lists 77 groups with 'iron' in the title, but most are envIRONment. Any ideas? SignatureAndy Taylor [Chair, N E Lupus Group]. <URL:http://www.northeastlupus.org.uk> > Is it just me or is the discussion of lupus not popular here anymore? > Actually, there is little posted on lupus at all. Is there another site > that I don't know about? > How is everyone doing? Well, I'm still here . . . --Bill Thompson > Is it just me or is the discussion of lupus not popular here anymore? > Actually, there is little posted on lupus at all. Is there another site [quoted text clipped - 13 lines] > > George Thank you very much for this post. I found the group in hopes of finding info for a new lady friend who has Lupus but, like you, have found the group all but useless. Very few real posts and lots of "iron" nut posts. Using ThunderBird was able to filter out the "iron" poster but that means there are often no posts at at all. Suggest any regulars who want to use the group learn how to filter the nut case(s). Lou In message <4991903B.30905@invalid.com>, LouB <LouB@invalid.com> wrote [] >I found the group in hopes of finding info for a new lady friend who >has Lupus but, like you, have found the group all but useless. Try http://www.northeastlupus.org.uk and http://www.lupusuk.org.uk/ > Very few real posts and lots of "iron" nut posts. Using ThunderBird >was able to filter out the "iron" poster but that means there are often >no posts at at all. >Suggest any regulars who want to use the group learn how to filter the >nut case(s). Ha! I'm using a geeky emailer, and it tells me each time it has filtered a post! I have to apply the Mark 1 visual filter - spot'n'delete. One trick that can be useful is to reject postings made to more than say 2 or 3 groups. SignatureAndy Taylor [Chair, N E Lupus Group]. <URL:http://www.northeastlupus.org.uk> > In message <4991903B.30905@invalid.com>, LouB <LouB@invalid.com> wrote > [] [quoted text clipped - 14 lines] > One trick that can be useful is to reject postings made to more than say > 2 or 3 groups. I do not think TB will do that. Lou >> Is it just me or is the discussion of lupus not popular here anymore? >> Actually, there is little posted on lupus at all. Is there another [quoted text clipped - 25 lines] > > Lou Lou, I don't check out the group everyday but often enough to catch a question or two. There are many who are very knowledgeable about our cursed disease that can quote all of the latin, meds, therapies, etc. My lupus trip is in it's 15th year since diagnosis and I have experienced many symptoms and therapies. However, putting it down in words that are beneficial to my fellow travelers is not easy for me, especially on those foggy minded days. I find that when I do make an attempt to chip in my 2 cents worth, there is usually somebody that can improve on what I've offered or totally correct me. It doesn't matter to me, if the info gets to the one(s) who need it. So, let us continue to contribute and see if we can attract some attention! Good luck, George >>> Is it just me or is the discussion of lupus not popular here anymore? >>> Actually, there is little posted on lupus at all. Is there another [quoted text clipped - 47 lines] > > George And good luck to you! I shall keep watching and hoping I do not any help - meaning my lady does OK. Lou I'm still checking in almost daily. Sherry > I'm still checking in almost daily. Glad to meet you again Sherry! Me too. I just ignore the 'iron dude'. He used to crosspost to some of my othergroups too but now it's just this one. Nice to meet you too. Welcome aboard the ignore the "Iron Dude" train. Sure wish that the group was as active as it used to be. Hopefully people will start posting again soon. Sherry > Nice to meet you too. Welcome aboard the ignore the "Iron Dude" train. > Sure wish that the group was as active as it used to be. Hopefully > people will start posting again soon. > > Sherry It's always good to hear from you Sherry. Let's just hang around and see what happens! George George, I check in almost daily and will continue to do so. Maybe one of the reasons many have stopped posting has to do with the economy and job losses and giving up the cost of internet connections. Hopefully things will get better for all of us soon. Sherry |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2009 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.