Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 hi everyone! just thought i'd jump in and introduce myself...my name is Dejah, which is pronounced like the " deja " in " deja vu " but is not French, it's actually from an old sci-fi novel...my parents are kind of wacky, needless to say! I'm 22, and I started doing taebo in the summer but then i injured my back (not from taebo, it was from doing situps the wrong way i guess!) so i had to leave off for awhile. I started up again after Christmas and am hoping to lose weight and shape up in time for my wedding (which will be in august). i don't really diet although i do tend to wander in and out of veganism because i found that being on a vegan diet really seemed to help melt the pounds off, although i find it hard to stick to because i love cheese so much! Plus my fiance is french, and it's REALLY hard to avoid dairy when you're in france. I'm going back to france in a couple of weeks and eventually hope to end up with my fiance in London (he's looking for jobs there). needless to say there is a lot of stress involved in making such a drastic move away from home but when you're in love, you know how it is....actually, i'm curious about being able to buy Taebo tapes once i'm over there, if anybody lives in england i'd be curious to know if they released the same line of tapes as they have in the US or if i'm going to have to have my mom ship them over to me! Taebo is the only exercise routine that's ever worked for me. in just a couple of weeks i can already tell that i've lost a little in the waist area and my muscles are definitely stronger. i'd like to get the original basic and alternate between that and the live version just to mix it up a bit. it gets a bit predictable doing the same thing every day. this seems like a really great, supportive group, and i'm looking forward to being a part of it! --Dejah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 In a message dated 1/15/2002 8:22:51 PM Central Standard Time, goldmunde@... writes: > this seems like a really great, supportive group, and i'm looking forward to > > being a part of it! > > Welcome Dejah! Cool name! Jenni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 --- goldmunde@... wrote: > just thought i'd jump in and introduce myself...my > name is Dejah, Welcome Dejah )!!!!! I like unusual names )!!!!! It can be a pain when there's 5 million other people with your name. Sandie, Tae and Bo )!!!!! ===== " The task ahead of us is never as great as the power behind us. " " Faith is the daring of the soul to go farther than it can see. " " Act as if it were impossible to fail. " " There are no shortcuts to anyplace worth going. " __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 In a message dated 1/15/02 9:23:05 PM Eastern Standard Time, goldmunde@... writes: > this seems like a really great, supportive group, and i'm looking forward to > > being a part of it! Hey Dejah!!! I LOVE your name!! I am not sure about the Tae Bo tapes in the UK, but we have a few people who can help you out with that! I don't think they are as readily available there as they are here, so you may want to stock up Welcome to the group!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2002 Report Share Posted January 16, 2002 Welcome Dejah I live in the UK Video tapes currently available in the UK in shops are: UKBL1, UKBL2, UKBL3 - all of which are different from the orginal BL 12 tapes (ie not released in the US) TaeboGold TaeBo Advanced (I don't have this so cannot tell you if its a duplicate or not) Taebo Abs & Glutes (says Teabo4 on the side of the box) From QVCUK Original 4 Pack Studio Live 4 pack. Remember that we have PAL format in the UK, it's NTSC in the US so there are compatibility issues. My VCR can play NTSC tapes so I can play them Hope this helps Jill who has no idea what format tapes France has > I'm going back to france in a couple of weeks and eventually hope to end up > with my fiance in London (he's looking for jobs there). needless to say > there is a lot of stress involved in making such a drastic move away from > home but when you're in love, you know how it is....actually, i'm curious > about being able to buy Taebo tapes once i'm over there, if anybody lives in > england i'd be curious to know if they released the same line of tapes as > they have in the US or if i'm going to have to have my mom ship them over to > me! > > Taebo is the only exercise routine that's ever worked for me. in just a > couple of weeks i can already tell that i've lost a little in the waist area > and my muscles are definitely stronger. i'd like to get the original basic > and alternate between that and the live version just to mix it up a bit. it > gets a bit predictable doing the same thing every day. > > this seems like a really great, supportive group, and i'm looking forward to > being a part of it! > > --Dejah > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2002 Report Share Posted January 16, 2002 Dejah: Welcome to the group!!!!!!! You'll love it here, so keep posting. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2002 Report Share Posted January 16, 2002 Hi Dejah! Welcome to the group. I eat a vegan diet about 90% of the time, as well. I try to follow the recommendations of Dr. McDougall, so it is basically a low-fat vegan diet. Although, lately I've not been eating too well...I guess from the stresses of the new job. hehe. Yeah, , excuses excuses. To be honest, I haven't done Tae Bo in about a week, either. I've gotta get back to what I was doing before!! But, anyway...welcome once again Dejah!! Moeser *~*~*~*~*~*~*~*~*~*~*~*~*~ The Evolution of Spirit http://www.ericmoeser.com *~*~*~*~*~*~*~*~*~*~*~*~*~ Sign up for the FREE Health and Wealth newsletter! http://www.YourSuccessWeb.com *~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~ Re: newbie hi everyone! just thought i'd jump in and introduce myself...my name is Dejah, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2002 Report Share Posted January 16, 2002 >> Remember that we have PAL format in the UK, it's NTSC in the US so there are compatibility issues. My VCR can play NTSC tapes so I can play them Hope this helps<< thanks, Jill, that does help a lot! Actually, i've heard from a friend that you can buy VCRs that play NTSC and PAL formats...so i'll definitely be looking for one of those once i get overseas! >>> > Jill > who has no idea what format tapes France has<< Actually, I think it's PAL, like in the UK! and many thanks to everyone else for the warm welcome! --Dejah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2002 Report Share Posted December 20, 2002 Welcome ! Check out this site for tips on figuring out starting weight: http://www.exercise.about.com/library/weekly/aa011501b.htm Also it might be helpful to get a trainer to help you with proper form. I couldn't afford a trainer at my gym, but they were happy to show me one exercise. I learned a lot of exercises, one at a time that way. Or if you work out at home, check out the book, Beyond Brawn by Stuart Mc [sic], although it does take a while to receive that book, or Muscle Media magazine. There are very good descriptions that will help you protect your joints. A lot of people find they are very sore at first and that is normal. Check out the Body For Life Web site for recipes. You will have to set aside some time each week to prepare your foods or else you will be tempted. One guy on this list spends 90 minutes on a Sunday. Those of us who don't like to cook pack cans of tuna, apples, containers of cottage cheese, yogurt, oatmeal, and pouches of supplement mix, etc. Jeff Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2002 Report Share Posted December 20, 2002 on 12/19/02 9:10 PM, Ritter at sritter@... wrote: > I'd like some advice on how to find a good starting weight for each exercise, > in the past when I've worked out, I seem to have worked out with too much > weight in that I'd still be sore the next time it was time to do that muscle > group. Granted, the routine I was doing was different from the book. This > time I am going to go by the book. In the past I was doing reps with a > certain weight to failure, then dropping it by 10 and doing that until failure > and on and on. I kind of addressed this in my week one notes on my website http://www.reactuate.com/index.php?itemid=65 Basically your going to have to guess at first. Then you do your workout and see if you hit your tens. If you are real light, or real heavy you'll figure it out before you reach your 6s, and can adjust. Problem is when you realize your too heavy in your 12s. Now you don't know if it was because you were lifting too much before. I have some idea what I can do, so my guesses are pretty good, though it does take me a couple of workouts to get on track. Then I look at my last workout and if my 12s were 10s I up the weight by 5. (5 is my difference between sets.) In the past, how many reps could you do with a weight before failure and the need to go down? If that number was high - like over 10 - that weight might work as a target for your 8 set. If it was low - like 4 - you'll probably want to set your 6 lower than that and walk the numbers down. Also you probably want to make notes during the workout on how you felt under a certain weight. For instance sometimes I feel I could lift more, but my heart is racing on a 12 set. I note that and may go ahead an increase the weight, but take a longer rest before it. [That isn't official BFL, but it works for me.] And being sore 3 days later isn't totally uncommon. I generally just workout again anyway. > Also, the only supplement I currently plan to take is Whey Protien, when do > the experts think is the best time to take it and how many times per day? I'm no expert. I do a meal replacement shake twice a day, but it has been my goal to only do it once a day. I'm not a big breakfast eater and I'm usually in a hurry so a shake works really well for breakfast. I also do one for my last meal, though I'd like to do something like power pancakes, but haven't gotten them made yet. I've also make protein pudding before, but I'm thinking it actually has too little protein in it once you realize the 20g you added is spread between 5 or six bowls. I think I'm going to add this to my blog.... -- Ron " Creativity is God's gift to us. Using our creativity is our gift back to God. " - Cameron Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 Hi Doug, Welcome to both you and your wife! Feel free to ask any questions that you (or the wife) might have... there are a ton of knowledgeable people here. And if we can't answer a question, we can usually direct you to someplace that can. Best of luck to both of you, and I look forward to hearing about your progress. Jen B. > Hello, > > Just a quick note to say Hi. My Wife and I are starting our second > week on our first Challange....looks like there is some good > information here. > > Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 welcome .  your about the age I was when dx with this wonderful thing called stills. I to had to stop working and that was about 8 years ago now. I am a man so that is were we star to depart similarity's LOL. I do take pain meds now . I have gone with out Not fun and also have taken them every day to help hold things down some all have worked in ways and not worked . stills is a crazy deal as each of us a so different as people so is stills with each of us both in how it dose things to us and the meds we use and or how and what we take. you did get it right on the head about it being a thing of elimination. That is so true from the dx to how to deal with it. I also know that how I have dealt with mine has also changed over time . really sick at the start to a remission for a bit and now getting back to were i was at the start but some what different yet . they only things i have learned that help me is I do not look for a cure and I do not look for any thing to give me a remission . now i will take itehr one if handed to me but i do not look for them I just live each day I can to the best I can some day I do better then others but then again we each should be doing that any way LOL  so hugs and welcome  the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58  To learn about Stills Disease  http://www.stillsdisease.org/stills_info For conservitive minded people  http://www.americac2c.org " If  we ever forget that we're one nation under God, then we will be a nation gone  under. " ~ Reagan   In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown   A nation can survive its fools and even the ambitious. But it cannot survive treason from within.~Cicero                                                    " The  most terrifying words in the English language are: I'm from the government  and I'm here to help. "    ~  Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 jmreed0410  can I ask why they removed your stomic? the reason I am asking is my stills is also more organ then any thing other and has been from the start. so far I have kept all my parts some how but it has been a close call more then once.  I know they have looked at removal of this or that over time and in the end we kept them . all of that was also at the start when they were not sure what I had .. I also went out of state ( live in Idaho at the time ) to get a DX . I ended up going to Stanford Medical center Calif. it was there or the mayo and I had family close to Stanford so that is why I went there. as I said being mine is also organ involvement more then any thing other I was being like a cat curiosity . see now here you are the new person and I am asking you things aw well just like stills were not normal here LOL hugs  the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58  To learn about Stills Disease  http://www.stillsdisease.org/stills_info For conservitive minded people  http://www.americac2c.org " If  we ever forget that we're one nation under God, then we will be a nation gone  under. " ~ Reagan   In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown   A nation can survive its fools and even the ambitious. But it cannot survive treason from within.~Cicero                                                    " The  most terrifying words in the English language are: I'm from the government  and I'm here to help. "    ~  Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Hi , Welcome to the group, and sorry you had to be in such a way to find us. I think you'll find everyone very helpful, friendly and caring here. I certainly have, being new this year too.  Unfortunately, we all seem to have some things in common and some things uniquely our own. Some meds work for some, but not for others. Some have the complication of not " just " having Still's, but have other things going on that are not strictly Still's related. There doesn't seem to be any easy answers! But you'll always get support and love and sometimes a needed kick in the buns! I hope they find something that works for you soon. I'm glad you seem to have a great support system in person and aren't afraid to lean on them a bit. Sometimes we worry about not inconveniencing others so much, we don't see how much those same others want to help us.  Welcome, and see you around! Sue R. Subject: Re: RE: Newbie To: Stillsdisease Date: Sunday, November 30, 2008, 11:50 PM Hey Elly, My name is and I am female,and 42 yrs old, MARKETPLACE From kitchen basics to easy recipes - join the Group from Kraft Foods Change settings via the Web (Yahoo! ID required) Change settings via email: Switch delivery to Daily Digest | Switch format to Traditional Visit Your Group | Yahoo! Groups Terms of Use | Unsubscribe Recent Activity  3 New MembersVisit Your Group Yahoo! Health Memory Loss Are you at risk for Alzheimers? Meditation and Lovingkindness A Yahoo! Group to share and learn. Y! Groups blog The place to go to stay informed on Groups news! ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Hi and welcome. My nickname here is and I was diagnosed 31 years ago at the age of 19. My Still's is now in remission. I love this family here and wouldn't trade them for anything in the world. I haven't heard of the medication you're speaking of but the best of luck when trying it. I hope it will be your magic. Again welcome and we look forward to being your friends. _____ On Behalf Of jmreed0410 Subject: Newbie HI everyone, I am newly dx with Stills. I have been researching for info on Still's, any help would be appreciated if the Cytoxan does not work its off to the Mayo clinic. ____________________________________________________________ Easy-to-use, advanced features, flexible phone systems. Click here for more info. http://thirdpartyoffers.netzero.net/TGL2241/fc/PnY6ryAzrQZv8MKNqUsz1cdkQBfzwzaJQ\ LpUidfJDgHFE6ve0zL22/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Thanks Marty, it is good to know that you and the others are out there to talk to when you need it. I have a Oncology appt. on tuesday, its funny that Dr. Baltz was treating my B-12 deficiency and my iron deficient anemia from have my stomach removed. He is actually the one who discovered that it was Still's, I showed up one day feeling horrible, he and my rheumotologist had thought for a while before the day in Jan 2008, that I had some sort of autoimmune disorder they just were not sure what it was. Back to my story, I had a temp 103, WBC 67,000, other lab was all screwed up, and a ferritin level of 4,000. That's what gave it away, for almost 2 years of iron transfusions and only getting my ferritin up to 125 at most on a good day. Had to have all the test to rule out cancer, bacterial infection, and 1,000 other things that it could be and it was not any of them. By the middle of March, it was decided it was Still's disease. Again thanks!!! Where do you live?  Subject: Re: RE: Newbie To: Stillsdisease Date: Monday, December 1, 2008, 12:52 AM welcome .  your about the age I was when dx with this wonderful thing called stills.. I to had to stop working and that was about 8 years ago now. I am a man so that is were we star to depart similarity's LOL. I do take pain meds now . I have gone with out Not fun and also have taken them every day to help hold things down some all have worked in ways and not worked . stills is a crazy deal as each of us a so different as people so is stills with each of us both in how it dose things to us and the meds we use and or how and what we take. you did get it right on the head about it being a thing of elimination. That is so true from the dx to how to deal with it. I also know that how I have dealt with mine has also changed over time . really sick at the start to a remission for a bit and now getting back to were i was at the start but some what different yet . they only things i have learned that help me is I do not look for a cure and I do not look for any thing to give me a remission . now i will take itehr one if handed to me but i do not look for them I just live each day I can to the best I can some day I do better then others but then again we each should be doing that any way LOL  so hugs and welcome  the rednecks Marty & G. the redneck's my space http://www.myspace. com/martyg58  To learn about Stills Disease  http://www.stillsdi sease.org/ stills_info For conservitive minded people  http://www.americac 2c.org " If  we ever forget that we're one nation under God, then we will be a nation gone  under. " ~ Reagan   In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown   A nation can survive its fools and even the ambitious. But it cannot survive treason from within.~Cicero                                                    " The  most terrifying words in the English language are: I'm from the government  and I'm here to help. "    ~  Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 I am happy to answer all that I can. As I said, I am in the medical field, I had just recently got my license to be a Physician assistant, next step was to go to medical school, I may never see that dream, so I have some answers that maybe some others don't. I had to have my stomach removed because it had stopped functioning like it should. First I had a partial removal because the upper 1/3 still functioned somewhat and the surgeon was trying to save as much as possible. About 8 months later it ceased to function all together. It would not empty and when I ate it just backed up in my esophagus, like severe reflux and I had two bouts with pneumonia during this time due to aspiration. I could not lay flat at night after eating or this would happen when I slept. So at this point, the rest was removed along with several feet of colon that had ulcerated from my meds just sitting there not going anywhere, anti-inflammatories and steroids are bad with a stomach. If you can keep your organs and live somewhat comfortably do it. I am now minus a spleen, gall bladder and appendix, and a majority of my lymph nodes in my neck. This has all occured since 2006, apparently I had a major flare and did not know it, because it had been attacking organs and we didn't know that was what was going on. I was fortunate that all the Drs. work well together and went back and looked at their notes and biopsies from the previous surgeries, and all the biopsies showed the same patterns and results, I wish we would have known sooner, but that was not to be. Big hugs Subject: Re: Newbie To: Stillsdisease Date: Monday, December 1, 2008, 12:59 AM jmreed0410  can I ask why they removed your stomic? the reason I am asking is my stills is also more organ then any thing other and has been from the start. so far I have kept all my parts some how but it has been a close call more then once.  I know they have looked at removal of this or that over time and in the end we kept them . all of that was also at the start when they were not sure what I had .. I also went out of state ( live in Idaho at the time ) to get a DX . I ended up going to Stanford Medical center Calif. it was there or the mayo and I had family close to Stanford so that is why I went there. as I said being mine is also organ involvement more then any thing other I was being like a cat curiosity . see now here you are the new person and I am asking you things aw well just like stills were not normal here LOL hugs  the rednecks Marty & G. the redneck's my space http://www.myspace. com/martyg58  To learn about Stills Disease  http://www.stillsdi sease.org/ stills_info For conservitive minded people  http://www.americac 2c.org " If  we ever forget that we're one nation under God, then we will be a nation gone  under. " ~ Reagan   In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown   A nation can survive its fools and even the ambitious. But it cannot survive treason from within.~Cicero                                                    " The  most terrifying words in the English language are: I'm from the government  and I'm here to help. "    ~  Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2008 Report Share Posted December 27, 2008 Hi , Welcome to the Family. Hope you were able to enjoy the holiday. You will get a lot of good information here, ways of coping, things to be watchful for and how to be your best asset! Happy, painfree New Year! Sue R Subject: Newbie To: Stillsdisease Date: Saturday, December 27, 2008, 3:57 AM Hi all... I guess I don't know really what to say. I was diagnosed with Still's this past week (after being ill for 2 months and being tested for every other thing under the sun). I finally got to a Rheumatologist who recognized the symptoms and did the blood work that showed classic elevations and such. I joined this forum since nobody I know has been afflicted with this other than me (nobody I know has even heard of it!) and I thought I might need support or be able to lend support. That is all for now... I hope you all had a very Happy Holiday (whichever you may celebrate!) and have a happy new year. =) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Hi ee and welcome.Sounds like you have gone through the stills gamut of tests!It is highly unlikely that you would know or meet someone else with Still's,we're a rare breed!!! I am glad you decided to join us,we are a very special group of people and speaking for myself,noone really understands our struggles like we do.Sit back relax and enjoy the ride,we will be here for you whenever you need us.Chances are someone will have experienced something you are going through and can commiserate.Though we all have the same disease,we are also very different in our symptoms at times.We are not all on the same meds,some don't work for one,but do for another.I am so sorry you had to find us,but glad you did.Now you will have many shoulders to cry on,sounding boards to vent to and people who know how you feel.Nice to meet you and I love your name. love Elly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Welcome ! I've only been with the group for a few months myself, but I must say I get a lot of support from the group! I'm sorry you got diagnosed, but I'm happy for you that you were diagnosed so quickly! My diagnosis was almost 10 years in the making! happy you found us! one of your new Still's friends, Jo In a message dated 12/26/2008 10:57:46 P.M. Eastern Standard Time, shawnee3101@... writes: Hi all... I guess I don't know really what to say. I was diagnosed with Still's this past week (after being ill for 2 months and being tested for every other thing under the sun). I finally got to a Rheumatologist who recognized the symptoms and did the blood work that showed classic elevations and such. I joined this forum since nobody I know has been afflicted with this other than me (nobody I know has even heard of it!) and I thought I might need support or be able to lend support. That is all for now... I hope you all had a very Happy Holiday (whichever you may celebrate!) and have a happy new year. =) **************New year...new news. Be the first to know what is making headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 --- Hi Kate. Before all my other Stills symptoms arose, around 3 years ago, I was seeing a Neurologist for debilitating headaches that lasted days. He came up with cluster HAs but since my Stills symptoms have progressed in the last couple years after that, most in the last year, I'm not so sure that the HAs aren't from Stills. I am now on Vicodin also since I have found a Primary Care Dr. that is compassionate to my issue but doesn't have the expertise to help any further. I've been to a Rheumatologist recently and he couldn't come up with anything except to say that I don't have Arthritis after all. That was quite a blow!! I was thinking...Now what?! Then I found the Stills web site. I'm trying to collect as much information as I can since every Dr. bill is paid by cash, and that is getting scarce, just to get negative results and told they can't find anything. Do you possibly know exactly what tests were positive/high that your Dr. came up with this diagnosis? I could compare them to mine. Thank you very much for taking the time to reply to this. I'm sure you know how much it will be appreciated. Hope your day is pain free, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 HI , I have been reading the emails you are currently asking questions about. My Rheumy says that sometimes the arthritis shows up later in the disease progression, because at first I had been asking why were all the x-rays of my hands normal. Even though they hurt and would swell, same goes for some of the other joints they had x-rayed. Now, almost a year later my x-rays are starting to reveal joint erosion, which of course now we are trying to stop with the Kineret. I also notice that you mention what test some of us have had done, my WBC currently is running almost 30,000, but I do not have an infection. My Ferritin level is 3,400 as of yesterday, Sed rate was 56, my liver enzymes are high, and my daily temp spike usually happens around 4:00pm and runs anywhere from 101 to 103 degrees. Keep on researching, if you are fortunate enough to have a good Rheumy, I would take all your research and see if he is open to suggestions. If not see if you GP will help. Take Care, ________________________________ To: Stillsdisease Sent: Thursday, January 15, 2009 9:13:07 AM Subject: Re: Newbie --- Hi Kate. Before all my other Stills symptoms arose, around 3 years ago, I was seeing a Neurologist for debilitating headaches that lasted days. He came up with cluster HAs but since my Stills symptoms have progressed in the last couple years after that, most in the last year, I'm not so sure that the HAs aren't from Stills. I am now on Vicodin also since I have found a Primary Care Dr. that is compassionate to my issue but doesn't have the expertise to help any further. I've been to a Rheumatologist recently and he couldn't come up with anything except to say that I don't have Arthritis after all. That was quite a blow!! I was thinking...Now what?! Then I found the Stills web site. I'm trying to collect as much information as I can since every Dr. bill is paid by cash, and that is getting scarce, just to get negative results and told they can't find anything. Do you possibly know exactly what tests were positive/high that your Dr. came up with this diagnosis? I could compare them to mine. Thank you very much for taking the time to reply to this. I'm sure you know how much it will be appreciated. Hope your day is pain free, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 Hi , Also, one thing to keep in mind is that the goal is to keep your joints from eroding. That is why many of the DMARDs and Biologics are used at the onset of the diagnosis, before physical damage is actually present. That is the same concept for RA. The presence of arthritis pain, usually joints on both sides of the body are effected and is one of the " major " markers Dr. Cush uses in defining AOSD. (see stillsdisease.org) The first stage of the arthritis part of these diseases is the joint pain and soft tissue inflammation. This is inflammation taking place within the joints causing the pain. At this point little or no damage has taken place and the goal is to stop the inflammatory cacade of the cytokine chemicals leading to the attack on the joints. If left uncontrolled, that is when over time the white cells gnaw away at the joints. So, in a nutshell, the abscence of erosion is a good thing. The marker of the arthritis is that when rising in the morning there is painful joints and it takes over an hour for the pain to improve while working the painful joints. You will see this description on most discussion related to autoimmune/autoinflammatory arthritis. Do you have any joint pain, especially first thing in the morning? Remember, once damage has occurred it is for all intent and purpose, permanent. And Yes, we do not get all the symptoms at the same time in our progression of the disease and if no arthritis, yet, if it is AOSD it will most likely appear. Mine started in my ankles and I actually confused that with other things they thought I had, or the early doctors did prior to my Rheumy asking all the right questions. Tom frm PA > > HI , > I have been reading the emails you are currently asking questions about. > My Rheumy says that sometimes the arthritis shows up later in the disease progression, because at first I had been asking why were all the x-rays of my hands normal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 Hi ,   I guess I know how you feel having to pay a lot (with each payment not sure how long my resources can last too) to get a lot of negative results. Being the caregiver to my Down Syndrome brother who has been hospitalised twice since end of Sep 08, it is also heart wrenching to see him in pain, having numerous syringe pricks to get blood for tests, a result of which being already anaemic, he needed blood transfusion 4x thus far and has suffered many side effects due to drugs tried. My brother is now one step away to being diagnose with Still. The rheumatologist I saw said his symptoms pointed to Stills but to rule out other complications, he needs to run a bone marrow test first to rule out leukemia since Downs children are also prone to having that and leukemia could also present some of those symptoms. Just wonder has anyone here done any bone marrow test before? What should I expect, in terms of possible side effects besides the normal ones of pain, possible site infection and nerve damaged if not done properly? greatly blessed by all the sharings and wishing all a healthier 2009 Yin ________________________________ To: Stillsdisease Sent: Thursday, 15 January 2009 11:13:07 Subject: Re: Newbie --- Hi Kate. Before all my other Stills symptoms arose, around 3 years ago, I was seeing a Neurologist for debilitating headaches that lasted days. He came up with cluster HAs but since my Stills symptoms have progressed in the last couple years after that, most in the last year, I'm not so sure that the HAs aren't from Stills. I am now on Vicodin also since I have found a Primary Care Dr. that is compassionate to my issue but doesn't have the expertise to help any further. I've been to a Rheumatologist recently and he couldn't come up with anything except to say that I don't have Arthritis after all. That was quite a blow!! I was thinking...Now what?! Then I found the Stills web site. I'm trying to collect as much information as I can since every Dr. bill is paid by cash, and that is getting scarce, just to get negative results and told they can't find anything. Do you possibly know exactly what tests were positive/high that your Dr. came up with this diagnosis? I could compare them to mine. Thank you very much for taking the time to reply to this. I'm sure you know how much it will be appreciated. Hope your day is pain free, Have a new Yahoo! Mail account? Kick start your journey by importing all your contacts! http://www.trueswitch.com/yahoo-sg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 Tom, I was wondering if you could tell me where I can find info regarding white cells destroying the joints. My white cell count has been high for the 3 1/2 years that I had stills. This info could be helpful when I take Met Life to court. Thanks, Brett Re: Newbie Recent Activity a.. 3New Members b.. 6New Photos Visit Your Group Biz Resources Y! Small Business Articles, tools, forms, and more. Everyday Wellness on Yahoo! Groups Find groups that will help you stay fit. Check out the Y! Groups blog Stay up to speed on all things Groups! . __________ Information from ESET NOD32 Antivirus, version of virus signature database 3769 (20090115) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com Quote Link to comment Share on other sites More sharing options...
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