Guest guest Posted August 17, 2012 Report Share Posted August 17, 2012 I live in sville so we are not far from each other at all~!  I cant remember the name of the Rheumy that gave me the diagnosis I will do some looking and try to remember him ( I think he was on 86th st) because the short time I was able to see him I thought he was great, however I lost my insurance shortly after he diagnosed me so I'm can't vouch for how he would treat Stills.  I also have Antiphospholipid Antibody Syndrome and that is what he had been treating me for,  I had a 3 week stay at the hospital with a dozen baffled doctors unable to tell me what had happened to me.  I was determined to try to figure it out because it got pretty serious while I was there and that scared me, I mentioned all my symptoms and test results to him and he said... " sounds like Stills Disease,  good thing is,  we treat Stills with some of the same meds as Antiphospholipid Antibody Syndrome and shortly after I was unable to see him.  I believe, as with many medical issues, that there are different severities of this disease, although I have not read that anywhere.  I think I am a lucky one and have daily symptoms, but they are mostly,  not severe, and have only had 2 pretty bad flares that required hospital stays.  I don't do anything special but I do try to avoid over exertion and stress and rest when my body tells me to.  The sun can trigger my antibodies to flare up, and sometimes when that happens the Stills is right there with it, so obviously I try to limit my exposure to the sun.  For me, dealing with Stills has become a trial and error thing,  learning to read my body and do what I think it is telling me.  One thing that I have noticed through the years for me is that I will have an intense craving for certain foods that I normally don't like,  foods that are high in iron,  or foods that are high in protein.  And those cravings seem to coincide with the joint and body aches of Stills!  Crazy. You have found a great group of people here!  It's wonderful for me to talk to others who know what this is all about and understand my feelings.  There is also a facebook page that I like a lot too~!   http://www.facebook.com/groups/Internationalstillsdiseasefoundation/ .   It's defiantly a learning experience to deal with Stills, and I am glad your Dad has you to help~! Hugs....Ang~! To: Stillsdisease Sent: Thursday, August 16, 2012 10:53 PM Subject: Re: Indiana Stills  We are in indianapolis and unfortunately between the office staff and the dr we are not having a great experience. do you have a regular dr that you have seen? or one that you would recommend? Happy that I have found this group.. and someone like you!! We are in the early phase so I am sure you will see many posts from me asking all sorts of questions Starting with, how are you keeping your flares down? have you changed your diet? [i have been doing a lot of research about the anti- inflammatory diet and have started changing to this but have not gotten to far since its very hard to give up all the food that we like. MJ > > Hi MJ...Welcome to the group, and might I add, you'll love it here~!  I am from Indiana and let me say I am SO super excited that you are too...as I read your e-mail I said to my husband " OMG, there's someone else in Indiana that has Stills too! "  I was diagnosed with Adult Stills in  2007, around 20 years after what I believe to be my first flare.  After talking to some of the others, I also believe that my Stills is probably mild compared to some as I am currently not medicated (no insurance) and do fairly well.  I had been doing very well for almost a year, just the normal joint aches and low energy, but nothing I couldn't deal with, until a few weeks ago but my body is pulling itself out slowly...I haven't been hospitalized in around 5 years or so.  That stay is when I got the diagnosis.  You will find so much support here in this group along with so much information...it's wonderful to have others that completely understand Stills and the > things that go with it.  What part of Indiana are you from?   > >  HUGS~!  Angie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2012 Report Share Posted August 17, 2012 Hello to my central Indiana neighbors! I am in Indianapolis. I was diagnosed on 2009 though I think I have had Stills since my early 20s (I am now 52). My rheumy is Dr. Kathleen . She is part of Community Hospitals. Dr. is great! I was having the worst flair - severe joint pain, extreme fatigue, etc. She met with me food 1 1/2 hrs., asked lots of questions, took notes, and had 16 vials of blood drawn. She suspected Stills, but waited until my blood work came back to confirm my diagnosis. I have had one flair up since 2009 and am now on Enbrel and doing well:) Sent from my Verizon Wireless 4GLTE smartphone ----- Reply message ----- To: " Stillsdisease " <Stillsdisease > Subject: Re: Indiana Stills Date: Fri, Aug 17, 2012 7:49 am I live in sville so we are not far from each other at all~!  I cant remember the name of the Rheumy that gave me the diagnosis I will do some looking and try to remember him ( I think he was on 86th st) because the short time I was able to see him I thought he was great, however I lost my insurance shortly after he diagnosed me so I'm can't vouch for how he would treat Stills.  I also have Antiphospholipid Antibody Syndrome and that is what he had been treating me for,  I had a 3 week stay at the hospital with a dozen baffled doctors unable to tell me what had happened to me.  I was determined to try to figure it out because it got pretty serious while I was there and that scared me, I mentioned all my symptoms and test results to him and he said... " sounds like Stills Disease,  good thing is,  we treat Stills with some of the same meds as Antiphospholipid Antibody Syndrome and shortly after I was unable to see him.  I believe, as with many medical issues, that there are different severities of this disease, although I have not read that anywhere.  I think I am a lucky one and have daily symptoms, but they are mostly,  not severe, and have only had 2 pretty bad flares that required hospital stays.  I don't do anything special but I do try to avoid over exertion and stress and rest when my body tells me to.  The sun can trigger my antibodies to flare up, and sometimes when that happens the Stills is right there with it, so obviously I try to limit my exposure to the sun.  For me, dealing with Stills has become a trial and error thing,  learning to read my body and do what I think it is telling me.  One thing that I have noticed through the years for me is that I will have an intense craving for certain foods that I normally don't like,  foods that are high in iron,  or foods that are high in protein.  And those cravings seem to coincide with the joint and body aches of Stills!  Crazy. You have found a great group of people here!  It's wonderful for me to talk to others who know what this is all about and understand my feelings.  There is also a facebook page that I like a lot too~!   http://www.facebook.com/groups/Internationalstillsdiseasefoundation/ .   It's defiantly a learning experience to deal with Stills, and I am glad your Dad has you to help~! Hugs....Ang~! To: Stillsdisease Sent: Thursday, August 16, 2012 10:53 PM Subject: Re: Indiana Stills  We are in indianapolis and unfortunately between the office staff and the dr we are not having a great experience. do you have a regular dr that you have seen? or one that you would recommend? Happy that I have found this group.. and someone like you!! We are in the early phase so I am sure you will see many posts from me asking all sorts of questions Starting with, how are you keeping your flares down? have you changed your diet? [i have been doing a lot of research about the anti- inflammatory diet and have started changing to this but have not gotten to far since its very hard to give up all the food that we like. MJ > > Hi MJ...Welcome to the group, and might I add, you'll love it here~!  I am from Indiana and let me say I am SO super excited that you are too...as I read your e-mail I said to my husband " OMG, there's someone else in Indiana that has Stills too! "  I was diagnosed with Adult Stills in  2007, around 20 years after what I believe to be my first flare.  After talking to some of the others, I also believe that my Stills is probably mild compared to some as I am currently not medicated (no insurance) and do fairly well.  I had been doing very well for almost a year, just the normal joint aches and low energy, but nothing I couldn't deal with, until a few weeks ago but my body is pulling itself out slowly....I haven't been hospitalized in around 5 years or so.  That stay is when I got the diagnosis.  You will find so much support here in this group along with so much information...it's wonderful to have others that completely understand Stills and the > things that go with it.  What part of Indiana are you from?   > >  HUGS~!  Angie > > Quote Link to comment Share on other sites More sharing options...
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