Guest guest Posted November 7, 2001 Report Share Posted November 7, 2001 's doctors have told me that his " immune system is full > of holes--it picks and chooses what will work and what won't work with no > real pattern to it " . Some of his antibodies work, others don't--both with > polysaccharide and proteins. There seems to be no rhyme or reason to how > his sub-class numbers come out--sometimes it's low in 1 and 4, sometimes > it's 1 and 3, and the last time it was 1 and 2. Same with his IgG's and > IgM's, These numbers have a large fluctuation to them--except the IgG's > while on IVIG. > > Just my .02. > > -mom to , 8, dysgammalgobulinemia, etc; ,10; ,3. > , I am considering sending your e-mail on to our ped. The " hole in the immune system " theory seems to sound exactly like Autumn. She'll mount partial responses with both b & t cell tests; her IgG #'s fluctuate, especially between subclasses 1,2, & 4; she's sick all the time, but not always for the same reason. In this respect, she sounds just like . The only difference is that Autumn is not considered an IVIG candidate. Do your docs have any research (other than anecdotes) to back up their theory? Ray, mother to Tabitha (age 6), Autumn, age 3 (IgG Def., asthma, chronic sinusitis, and allergies), and Duncan Avery, 5 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2001 Report Share Posted November 11, 2001 Hi Eleanor, sorry our chat didn't work out - maybe next time. Ma was thought to have RA for a long while before the onset of stills. She was also tested for Lupus in the hospital as one of the first batches of tests before the dx of stills. This seems to be one of the first tests you are tested for before we come to the outcome of stills. I guess they are similar in alot of ways. The docs still treated her the same after the dx with stills - with high doses of entrophen. Hope this helps. Take Good Care Sheri Question As you guys know, I'm very new to this illness so I still have so many questions. Have any of you tested positive for lupus or rheumatoid arthrits after being diagnosed with Stills? My rheumy is going to monitor me for this because he said about 50% of the time this can turn either. Have you heard the same? Thanks, Eleanor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2001 Report Share Posted November 11, 2001 Eleanor ; I to have been tested a few times for both and always they come back neg. I two have been told that it is stills for life but that will not stop you from posablely getting one or the other not as part or turning in to but if you are unlucky you could possibly get them as still's with also _______ ________ ect as most of us also are fiber suffers also and we say we have still but some will still call it rheumatoid arthrightes which I guess is right and wrong but like most of us you are most likely not normal as that is what makes us normal and by the way welcome and please ask as the only dumb question is the one you do not ask as if you knew it you would not ask in the first place right and that is what we all are here for to help each other out as some times we are the only one who seam to understand how this thing effects you and your life and or how or other halves change also because of there love and helplessness for us pain free and if not take some pills and try to forget it Marty G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 Hi - I've had Still's for 19 years and have never heard that before. My doctor is a real specialist in Lupus, and he never said anything. He did do a blood test for lupus recently, and when I asked him about it, he said he was not looking for Lupus, but the test was one that was done as part of a group of tests he had asked for. Personally, I think Still's is its own disease and doesn't turn into anything. With our symptoms, they usually think of lupus as first, and then rule it out, where it stays. marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 Hi - I've had Still's for 19 years and have never heard that before. My doctor is a real specialist in Lupus, and he never said anything. He did do a blood test for lupus recently, and when I asked him about it, he said he was not looking for Lupus, but the test was one that was done as part of a group of tests he had asked for. Personally, I think Still's is its own disease and doesn't turn into anything. With our symptoms, they usually think of lupus as first, and then rule it out, where it stays. marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 Hi - I've had Still's for 19 years and have never heard that before. My doctor is a real specialist in Lupus, and he never said anything. He did do a blood test for lupus recently, and when I asked him about it, he said he was not looking for Lupus, but the test was one that was done as part of a group of tests he had asked for. Personally, I think Still's is its own disease and doesn't turn into anything. With our symptoms, they usually think of lupus as first, and then rule it out, where it stays. marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 Hi Eleanor, I've read and heard that very thing...even my Rheumy said something about how it could later turn into Lupus...but at the time I didn't give it much thought. I wish I would have asked more questions about it. I see Dr. Cush again in March and I think that's one of the questions I'm going to ask him about. I'll let everyone know what he has to say on the topic. Sorry I couldn't be more help. Love, Kim Jen & Doug Pickard wrote: Hi Eleanor, I have been tested for both lupus and RA and both results have came back negative. I haven't heard that once you had Stills it could turn into lupus or RA. My understanding was once you had been diagnosed with Stills, you were stuck with it . I could be wrong though! Don't worry about asking questions - I enjoy reading them and learning from all the responses - that's what the sight is for. I'm fairly new to Stills as well and there seems to be so much to learn about it! Jen Question As you guys know, I'm very new to this illness so I still have so many questions. Have any of you tested positive for lupus or rheumatoid arthrits after being diagnosed with Stills? My rheumy is going to monitor me for this because he said about 50% of the time this can turn either. Have you heard the same? Thanks, Eleanor Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 Hi Eleanor, I've read and heard that very thing...even my Rheumy said something about how it could later turn into Lupus...but at the time I didn't give it much thought. I wish I would have asked more questions about it. I see Dr. Cush again in March and I think that's one of the questions I'm going to ask him about. I'll let everyone know what he has to say on the topic. Sorry I couldn't be more help. Love, Kim Jen & Doug Pickard wrote: Hi Eleanor, I have been tested for both lupus and RA and both results have came back negative. I haven't heard that once you had Stills it could turn into lupus or RA. My understanding was once you had been diagnosed with Stills, you were stuck with it . I could be wrong though! Don't worry about asking questions - I enjoy reading them and learning from all the responses - that's what the sight is for. I'm fairly new to Stills as well and there seems to be so much to learn about it! Jen Question As you guys know, I'm very new to this illness so I still have so many questions. Have any of you tested positive for lupus or rheumatoid arthrits after being diagnosed with Stills? My rheumy is going to monitor me for this because he said about 50% of the time this can turn either. Have you heard the same? Thanks, Eleanor Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 Hi Eleanor, I've read and heard that very thing...even my Rheumy said something about how it could later turn into Lupus...but at the time I didn't give it much thought. I wish I would have asked more questions about it. I see Dr. Cush again in March and I think that's one of the questions I'm going to ask him about. I'll let everyone know what he has to say on the topic. Sorry I couldn't be more help. Love, Kim Jen & Doug Pickard wrote: Hi Eleanor, I have been tested for both lupus and RA and both results have came back negative. I haven't heard that once you had Stills it could turn into lupus or RA. My understanding was once you had been diagnosed with Stills, you were stuck with it . I could be wrong though! Don't worry about asking questions - I enjoy reading them and learning from all the responses - that's what the sight is for. I'm fairly new to Stills as well and there seems to be so much to learn about it! Jen Question As you guys know, I'm very new to this illness so I still have so many questions. Have any of you tested positive for lupus or rheumatoid arthrits after being diagnosed with Stills? My rheumy is going to monitor me for this because he said about 50% of the time this can turn either. Have you heard the same? Thanks, Eleanor Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2001 Report Share Posted November 19, 2001 Hi Patti. My sed rate is normal. That's why I don''t understand the low-grade. Oh well. I'll have to give it some time. Eleanor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2001 Report Share Posted December 9, 2001 we sure did but of all the fun places it was were you do not want it and that is were the legs meet the trunk not a good place to itch when you are out in public but that's the way it went the rumy gave a prescription for some cream and it cleared right up but now two months later I think it's trying to come back and wouldn't you know it just as the parties start o well good luck and get it taken Marty G. question Hi Gang. Could you please tell me if any of you who have been on prednisone have experienced either a fungal rash or some form of erythema. My doc says that pred lowers your immune system so it is sometimes common to get an unexpected fungal infection. It still doesn't make sense to me though how I could have gotten a ring -like type of rash on my ankle of all places. Anyway... I'm using a topical anti-fungal cream, and it's not doing much good. I'm thinking of going to the dermatologist to make sure it isn't erythema but wanted to see if any of you had any similar experiences. Thanks, Eleanor Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2001 Report Share Posted December 9, 2001 we sure did but of all the fun places it was were you do not want it and that is were the legs meet the trunk not a good place to itch when you are out in public but that's the way it went the rumy gave a prescription for some cream and it cleared right up but now two months later I think it's trying to come back and wouldn't you know it just as the parties start o well good luck and get it taken Marty G. question Hi Gang. Could you please tell me if any of you who have been on prednisone have experienced either a fungal rash or some form of erythema. My doc says that pred lowers your immune system so it is sometimes common to get an unexpected fungal infection. It still doesn't make sense to me though how I could have gotten a ring -like type of rash on my ankle of all places. Anyway... I'm using a topical anti-fungal cream, and it's not doing much good. I'm thinking of going to the dermatologist to make sure it isn't erythema but wanted to see if any of you had any similar experiences. Thanks, Eleanor Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2001 Report Share Posted December 9, 2001 we sure did but of all the fun places it was were you do not want it and that is were the legs meet the trunk not a good place to itch when you are out in public but that's the way it went the rumy gave a prescription for some cream and it cleared right up but now two months later I think it's trying to come back and wouldn't you know it just as the parties start o well good luck and get it taken Marty G. question Hi Gang. Could you please tell me if any of you who have been on prednisone have experienced either a fungal rash or some form of erythema. My doc says that pred lowers your immune system so it is sometimes common to get an unexpected fungal infection. It still doesn't make sense to me though how I could have gotten a ring -like type of rash on my ankle of all places. Anyway... I'm using a topical anti-fungal cream, and it's not doing much good. I'm thinking of going to the dermatologist to make sure it isn't erythema but wanted to see if any of you had any similar experiences. Thanks, Eleanor Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 Hi Eleanor: Just wanted to let you know that Dr. Reginato was my Daughters Doctor and he is one of the best at treating and diagnosing Stills. He is a good man but he travels a lot and is always gone. He is very knowledgeable with Stills so believe what he says. Take care now. Love Y'as, Bob Question Hi Gang... I just got back from going to another rheumatologist, (Dr. Reginatto in Cherry Hill, NJ). He said it's quite possible that if I don't get another flare after my initial onset that what I have wasn't Stills but a viral infection of some type. He said this because my arthritic symptoms were " migratory " , by ferritin level was high, but not as high as some people with Stills and I didn't have leucocytosis ( a high white blood cell count). He says if I get another flare after the inital onset, then it was probably Stills. Can anyone share any insight on this? Does this make sense? Thanks, Eleanor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2001 Report Share Posted December 29, 2001 Eleneor When my disease started it started with extreme fatigue and sore throats flu like symptoms and minor swelling in the fingers. i was under stress and they said it was combo flu and stress and i was retaining water. and i gradually got worse more sore throats,more tired and the swelling started going to other joints to at one point my hands and fingers were so swollen i couldnt use them and then my knees became swollen and the weight loss so just because your not in a severe flare doesnt mean it fcant get worse i think it took about 2years for me to get to my worsed and then after dx and trial and error on meds iam back to halfway normal or should say i was untill recently but i have been very sick latley and they domnt know if its stills or something else. goodluck connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi . I found your response VERY interesting. My regular rheumy is Dr. Gabel in Hazlet, NJ. I am his only Stills patient, but he was able to diagnose me in the hospital rather quickly. I went to Dr. Reginatto because he came recommended by the our support group. He has seen 35 Stills patients in total. I hope to never get a relapse again. But it was interesting to hear that if I don't get one again, how he felt it was then probably something viral. I don't know. I am very interested in hearing about the alternative approach. I'll look into the book you recommended. I went to a DO while I first had symptoms of the illness who did a hair analysis and believes that the reason I may be having this problem is because I have a high level of mercury and lead in my body. I never pursued doing anything after hearing that, but your response about " arsenic poisoning " makes me wonder if there is any validity to what he was saying. Anyway... Thanks for your message. Eleanor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi . I found your response VERY interesting. My regular rheumy is Dr. Gabel in Hazlet, NJ. I am his only Stills patient, but he was able to diagnose me in the hospital rather quickly. I went to Dr. Reginatto because he came recommended by the our support group. He has seen 35 Stills patients in total. I hope to never get a relapse again. But it was interesting to hear that if I don't get one again, how he felt it was then probably something viral. I don't know. I am very interested in hearing about the alternative approach. I'll look into the book you recommended. I went to a DO while I first had symptoms of the illness who did a hair analysis and believes that the reason I may be having this problem is because I have a high level of mercury and lead in my body. I never pursued doing anything after hearing that, but your response about " arsenic poisoning " makes me wonder if there is any validity to what he was saying. Anyway... Thanks for your message. Eleanor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi Eleanor, Who is your regular Rheumy? I was going to Dr Mermelstein in Chesnut Hill, Pa. Almost went to Reginatto for a second opinion, but was so happy with Mermelstein, I chose not to. I have been singing the praises of a homeopath whom I have been dealing with for the past 8 months. She diagnosed me, put me on a vitamin and homeopathic remedy regime and SUGGESTED that I change my diet. After following her direction I ceased taking ALL medications (started with 60mg pred per day, later 15mg of Methotrexate/week), ONE YEAR ahead of my Rheumys schedule! (according to my Rheumy). She also felt that I was misdiagnosed even though I had the rash, 106 degree fevers daily, severe muscle pain, night sweats, and ferritin level of 135,000. She believed I had arsenic poisoning(from sanding an old mantle piece). I could not verify this analysis, but I can attest to the fact that while following my homeopaths regime I not only have not had symptoms af " stills " but I have NEVER felt better in all my life. The diagnoses for stills is so general that anything that violently traumatizes the immune system will result in " stills " symptoms. Causes can be many in nature. I have been monitoring this group since I got sick and used to post more that I do now. There is no denying the severity of the symptoms, and the pain and loss of " quality of life " . I do however feel that a change in attitude toward modern medicine is essential in order to " beat " the symptoms that occur. How many people on this group are willing to do whatever it takes to beat this disease, including opening their minds to alternative treatments ? Treatments that do not do more harm to the body and only mask the symptoms, but attack the root cause of the problem and strengthens the body? There is a book called VIBRATIONAL MEDICINE by Dr. Gerber, that I highly recommend. There is a homeopath that I also highly recommend whos number I will give out upon personal request. I have nothing to gain financially from the sale of this book or recommending this homeopath(who saved my life). What I do have to gain is the knowledge that by buying the book or seeing my homeopath, people will improve the quality of their life, and loosen the painful grip of the symptoms that exist. I will not offer myself to comiserate in the the misery of this disease. It seems to me that so many here are stuck in believing that there is no way to recouperate, and that thereis no hope. I do not believe this. Without trying to hurt anyones feeling , I think that where it is comforting to find other people that are going through the same symptoms, when I first was diagnosed, and began to read this group, it was depressing to me that the people here were lacking hope and I found myself not wanting to read the posts because I was starting to beleive that I would never recover myself! Refusing to beleive this was one of the reasons that I am in perfect health today. I can only offer my knowledge to people of one way to possibly beat what we all call " stills " . I have offered this in the past , and I dont beleive in answering each post with a similar post " beating a dead horse " . But I will make this final attempt to offer information to those interested in getting better. I am not going to get into an argument with people about the validity of what I know to be true, and I only have the best intentions. To those interested, e-mail me. God Bless ALL, Yannessa Question > Hi Gang... > I just got back from going to another rheumatologist, (Dr. Reginatto in > Cherry Hill, NJ). > He said it's quite possible that if I don't get another flare after my > initial onset that what I have wasn't Stills but a viral infection of some > type. He said this because my arthritic symptoms were " migratory " , by > ferritin level was high, but not as high as some people with Stills and I > didn't have leucocytosis ( a high white blood cell count). > He says if I get another flare after the inital onset, then it was probably > Stills. > Can anyone share any insight on this? Does this make sense? > > Thanks, > Eleanor > > > Visit the Still's Disease Message Board > http://disc.server.com/Indices/148599.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi Eleanor, Who is your regular Rheumy? I was going to Dr Mermelstein in Chesnut Hill, Pa. Almost went to Reginatto for a second opinion, but was so happy with Mermelstein, I chose not to. I have been singing the praises of a homeopath whom I have been dealing with for the past 8 months. She diagnosed me, put me on a vitamin and homeopathic remedy regime and SUGGESTED that I change my diet. After following her direction I ceased taking ALL medications (started with 60mg pred per day, later 15mg of Methotrexate/week), ONE YEAR ahead of my Rheumys schedule! (according to my Rheumy). She also felt that I was misdiagnosed even though I had the rash, 106 degree fevers daily, severe muscle pain, night sweats, and ferritin level of 135,000. She believed I had arsenic poisoning(from sanding an old mantle piece). I could not verify this analysis, but I can attest to the fact that while following my homeopaths regime I not only have not had symptoms af " stills " but I have NEVER felt better in all my life. The diagnoses for stills is so general that anything that violently traumatizes the immune system will result in " stills " symptoms. Causes can be many in nature. I have been monitoring this group since I got sick and used to post more that I do now. There is no denying the severity of the symptoms, and the pain and loss of " quality of life " . I do however feel that a change in attitude toward modern medicine is essential in order to " beat " the symptoms that occur. How many people on this group are willing to do whatever it takes to beat this disease, including opening their minds to alternative treatments ? Treatments that do not do more harm to the body and only mask the symptoms, but attack the root cause of the problem and strengthens the body? There is a book called VIBRATIONAL MEDICINE by Dr. Gerber, that I highly recommend. There is a homeopath that I also highly recommend whos number I will give out upon personal request. I have nothing to gain financially from the sale of this book or recommending this homeopath(who saved my life). What I do have to gain is the knowledge that by buying the book or seeing my homeopath, people will improve the quality of their life, and loosen the painful grip of the symptoms that exist. I will not offer myself to comiserate in the the misery of this disease. It seems to me that so many here are stuck in believing that there is no way to recouperate, and that thereis no hope. I do not believe this. Without trying to hurt anyones feeling , I think that where it is comforting to find other people that are going through the same symptoms, when I first was diagnosed, and began to read this group, it was depressing to me that the people here were lacking hope and I found myself not wanting to read the posts because I was starting to beleive that I would never recover myself! Refusing to beleive this was one of the reasons that I am in perfect health today. I can only offer my knowledge to people of one way to possibly beat what we all call " stills " . I have offered this in the past , and I dont beleive in answering each post with a similar post " beating a dead horse " . But I will make this final attempt to offer information to those interested in getting better. I am not going to get into an argument with people about the validity of what I know to be true, and I only have the best intentions. To those interested, e-mail me. God Bless ALL, Yannessa Question > Hi Gang... > I just got back from going to another rheumatologist, (Dr. Reginatto in > Cherry Hill, NJ). > He said it's quite possible that if I don't get another flare after my > initial onset that what I have wasn't Stills but a viral infection of some > type. He said this because my arthritic symptoms were " migratory " , by > ferritin level was high, but not as high as some people with Stills and I > didn't have leucocytosis ( a high white blood cell count). > He says if I get another flare after the inital onset, then it was probably > Stills. > Can anyone share any insight on this? Does this make sense? > > Thanks, > Eleanor > > > Visit the Still's Disease Message Board > http://disc.server.com/Indices/148599.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 elan yes my joint pain was migratory in the beginning and then later some joints where just worse than the rest. now its just my left side. as for my blood counts everything was high connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Dear Eleanor, I did have the elevated white blood cell count. Probably not during my onset. I also had the migratory arthritis in the beginning. My disease started with the rash, then high fevers and then eventually most of my joints ended up swollen. I hope this helps. Love, jatw@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Eleanor, yes, I definitely had migratory pain. Now I experience a lot of pain on my left side. Especially in the joint areas, and it doesn't make sense to me, because I am right handed, and I thought that most of my pressure would be from that side of my body, thinking that, my right side would hurt more, but it doesn't. Does this make any sense? As far as blood work goes, I actually did the reverse in the beginning. The doctors called me in because my white counts were too low....way too low and I wasn't fighting off anything, they when I " flared " they went very high. Love, Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Eleanor, yes, I definitely had migratory pain. Now I experience a lot of pain on my left side. Especially in the joint areas, and it doesn't make sense to me, because I am right handed, and I thought that most of my pressure would be from that side of my body, thinking that, my right side would hurt more, but it doesn't. Does this make any sense? As far as blood work goes, I actually did the reverse in the beginning. The doctors called me in because my white counts were too low....way too low and I wasn't fighting off anything, they when I " flared " they went very high. Love, Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi Eleanor! Hope all is well with you! Yes, my leukocytosis was elevated, but I'm not sure the level and I did have migratory joint pain...and still do. It was not as bad at the beginning as it is now. Most of my disease was systemic at onset and joint pain (migratory) is setting in strong now. Love, Kim --- Elan727@... wrote: > Gang, > Could you please tell me if on the onset of this > disease if any of you " did > not " have leukocytosis ( elevated white blood cell > count) and if your > arthritis was " migratory " - meaning you would feel > stiffness/ pain in a joint > for a few days and then it would move to another > joint. > > Thanks, > Eleanor > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi Eleanor! Hope all is well with you! Yes, my leukocytosis was elevated, but I'm not sure the level and I did have migratory joint pain...and still do. It was not as bad at the beginning as it is now. Most of my disease was systemic at onset and joint pain (migratory) is setting in strong now. Love, Kim --- Elan727@... wrote: > Gang, > Could you please tell me if on the onset of this > disease if any of you " did > not " have leukocytosis ( elevated white blood cell > count) and if your > arthritis was " migratory " - meaning you would feel > stiffness/ pain in a joint > for a few days and then it would move to another > joint. > > Thanks, > Eleanor > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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