Guest guest Report post Posted May 18, 2012 Welcome !My mother has this and one of my daughters. My mother has no idea she has it but I recognize my triggers as hers. There is a lot to read here and I hope you find comfort and understanding here. Shonna Sent from my iPhone Hello Everyone, This condition is at its absolute worst when I first wake up in the morning, if any of my triggers occur I fly into a rage and it takes at least 30 minutes to calm all the way down-it leaves me exhausted. This condition has also has caused insomina for as long as I can remember-the smallest noise jolts me awake. My mother was the only other person I have ever met or heard of that had this besides me, I was starting to think I was nuts or over critical etc all the negative thing I have been called throughout the years. I look forward to being a member of this group. Thank you, Farrell = Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 18, 2012 Shonna, My mother and one of my daughters has Miso too!! I hate this so much. I wonder how many generations this may have gone back in my family. Three in a row.Mike To: "Soundsensitivity " <Soundsensitivity > Cc: "Soundsensitivity " <Soundsensitivity > Sent: Friday, May 18, 2012 2:43 PM Subject: Re: hello Welcome !My mother has this and one of my daughters. My mother has no idea she has it but I recognize my triggers as hers. There is a lot to read here and I hope you find comfort and understanding here. Shonna Sent from my iPhone Hello Everyone, This condition is at its absolute worst when I first wake up in the morning, if any of my triggers occur I fly into a rage and it takes at least 30 minutes to calm all the way down-it leaves me exhausted. This condition has also has caused insomina for as long as I can remember-the smallest noise jolts me awake. My mother was the only other person I have ever met or heard of that had this besides me, I was starting to think I was nuts or over critical etc all the negative thing I have been called throughout the years. I look forward to being a member of this group. Thank you, Farrell = Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 18, 2012 Found this group lastnight. i am the only one in my family that i know of with this. i have alot of triggers, like repetitive noises, gum chewing and popping, cats cleaning themselves and for sure people chewing, clearing their throats etc. I love making casserole dinners but can't stand the noise of mixing the ingredients together. the list is long, and the sounds drive me crazy. i have never seen a professional about it and am going to now. thanks for this site! > > >  > >Hello Everyone, > >     > >            This condition is at its absolute worst when I first wake up in the morning, if any of my triggers occur I fly into a rage and it takes at least 30 minutes to calm all the way down-it leaves me exhausted. This condition has also has caused insomina for as long as I can remember-the smallest noise jolts me awake. My mother was the only other person I have ever met or heard of that had this besides me, I was starting to think I was nuts or over critical etc all the negative thing I have been called throughout the years. I look forward to being a member of this group. > > > >Thank you, > > Farrell = > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 18, 2012 Me too. I take 150 mg. of Trazadone each night for sleep, but that won't help if I have to sleep with someone else.To: Soundsensitivity Sent: Fri, May 18, 2012 3:51:11 PMSubject: hello Hello Everyone, This condition is at its absolute worst when I first wake up in the morning, if any of my triggers occur I fly into a rage and it takes at least 30 minutes to calm all the way down-it leaves me exhausted. This condition has also has caused insomina for as long as I can remember-the smallest noise jolts me awake. My mother was the only other person I have ever met or heard of that had this besides me, I was starting to think I was nuts or over critical etc all the negative thing I have been called throughout the years. I look forward to being a member of this group. Thank you, Farrell Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 18, 2012 I take adivan now right before bed, just started to about six months ago and finally I can sleep all the way through the night. My husdand has to sleep in another room still though (always has), He knows that I might kick him with full force for snoring so he is safer alone. `I just saw in another email that this will be on 20/20 tonight?! You could knock me over with a feather on that one! Subject: Re: helloTo: Soundsensitivity Date: Friday, May 18, 2012, 7:16 PM Me too. I take 150 mg. of Trazadone each night for sleep, but that won't help if I have to sleep with someone else. To: Soundsensitivity Sent: Fri, May 18, 2012 3:51:11 PMSubject: hello Hello Everyone, This condition is at its absolute worst when I first wake up in the morning, if any of my triggers occur I fly into a rage and it takes at least 30 minutes to calm all the way down-it leaves me exhausted. This condition has also has caused insomina for as long as I can remember-the smallest noise jolts me awake. My mother was the only other person I have ever met or heard of that had this besides me, I was starting to think I was nuts or over critical etc all the negative thing I have been called throughout the years. I look forward to being a member of this group. Thank you, Farrell Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 19, 2012 I can't be around cats just for that reason, sends me flying yikes. I'm up now because I can hear my hubby snoring through the wall, had to go searching for the fan in the basement, so it freezing in here but its worth it. About a month ago I was in the doctors office and read a readers digest that had an article " are you nuts or normal " ,in it was a blurb about noise sensitivity (which is what I called what I had until finding this site), and it said, yes! Yes its nuts. Well I was ticked off, went home went off on a few rants and started looking around the web and poof phew found this and all these other people. Just in time to before I started to believe it. ------------------------------ >I have that problem (the insomnia, that is). One of my trigger sounds is my >cats grooming them selves. They sleep at the foot of our bed and often, >just as I am dozing off, I will hear one of their metal tags jingling which >sometimes means they are grooming. When that happens, I jolt awake and prop >up and look to see if they are grooming. If one of them is, I usually end >up pushing him off the bed with my foot. I feel bad every time I do that, >which ends up being at least once every night. Amazingly though, my cats >are pretty well trained to stop licking when I snap my fingers. I don't >want to snap loudly at night because I don't want to wake my husband up, >but during the day, I will snap my fingers and say " STOP " , and they stop >and go finish in another room every time. > >On Fri, May 18, 2012 at 4:51 PM, Yahoo! Account Services < >ccasella1@...> wrote: > >> ** >> >> >> Hello Everyone, >> >> This condition is at its absolute worst when I first wake up >> in the morning, if any of my triggers occur I fly into a rage and it takes >> at least 30 minutes to calm all the way down-it leaves me exhausted. This >> condition has also has caused insomina for as long as I can remember-the >> smallest noise jolts me awake. My mother was the only other person I have >> ever met or heard of that had this besides me, I was starting to think I >> was nuts or over critical etc all the negative thing I have been called >> throughout the years. I look forward to being a member of this group. >> >> Thank you, >> Farrell >> >> >> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 23, 2012 wow look into this http://www.inews15tn.net/jobs/?employment=8861917 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 5, 2012 ----Forwarded Message---- From: gaznfer197605@... To: windsinging@... Sent: Tue 5 Jun, 2012 6:25 PM IST Subject: hello Hello everyone i am Taher Ali age 34 from india im sufferer of stills for the past 5 years but i dignoses year ago before that there are speculation about this diseases many doctors thought i have blood cancer after checking my wbc and they also take bone marrow test on me but finally i diagnosed correctly now im on meditation. Im very happy to join this group. Take care everybody. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 5, 2012 ----Forwarded Message---- From: gaznfer197605@... To: windsinging@... Sent: Tue 5 Jun, 2012 6:25 PM IST Subject: hello Hello everyone i am Taher Ali age 34 from india im sufferer of stills for the past 5 years but i dignoses year ago before that there are speculation about this diseases many doctors thought i have blood cancer after checking my wbc and they also take bone marrow test on me but finally i diagnosed correctly now im on meditation. Im very happy to join this group. Take care everybody. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 7, 2012 Hi Ali. I'm Abhik, 22yrs old from Kolkata. Where do you live in India?? What do you do?? I also have AOSD since a year. In my case also doctors were confused and thought that the case might be Lymphoma. But finally they were able to identify the disease after 47 days of high fever along with other clinical manifestations.. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 7, 2012 Hi Ali. I'm Abhik, 22yrs old from Kolkata. Where do you live in India?? What do you do?? I also have AOSD since a year. In my case also doctors were confused and thought that the case might be Lymphoma. But finally they were able to identify the disease after 47 days of high fever along with other clinical manifestations.. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 7, 2012 Hi Abhik nice to meet you im from Chennai and im doing mobile recharge business how you doing now im hopping you get a remission takecare. Ali > > Hi Ali. I'm Abhik, 22yrs old from Kolkata. Where do you live in India?? What do you do?? I also have AOSD since a year. In my case also doctors were confused and thought that the case might be Lymphoma. But finally they were able to identify the disease after 47 days of high fever along with other clinical manifestations.. > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 7, 2012 Hi Abhik nice to meet you im from Chennai and im doing mobile recharge business how you doing now im hopping you get a remission takecare. Ali > > Hi Ali. I'm Abhik, 22yrs old from Kolkata. Where do you live in India?? What do you do?? I also have AOSD since a year. In my case also doctors were confused and thought that the case might be Lymphoma. But finally they were able to identify the disease after 47 days of high fever along with other clinical manifestations.. > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 14, 2012 Yep Holly, That was about how long ago she went for her 5 day evaluation. She was not fond of the doctors there at all. Hang in there. >To: Stillsdisease >Sent: Saturday, July 14, 2012 2:17 PM >Subject: Re: Re:Hello Fran/ > >Thanks, ! >I've not heard of anyone else having a bad visit there. I wonder if it was >the same doc? The one I saw, about 4-5 years ago (?) was middle aged, >slender asian woman, but I've forgotten her name. (Memory loss is a huge >side (?) effect of either the disease or the medications, that's for sure!) > Is that who your daughter saw? > >When I reported back to my rheumatologist, he was unhappy to hear of my >experience, but it turned out that he had gone to medical school with her, >and had about the same opinion of her that I had! I think if he knew >that's who I'd be seeing, he might have made a different choice at that >point! >Peace and Blessings to all, >*Holly * >*hollydorst@...* >* >* > > > >On Sat, Jul 14, 2012 at 2:06 PM, Butterfly Chaser < >butterflychaser999@...> wrote: > >> ** >> >> >> Hi Group, >> I'm in agreement with Holly. The sdale AZ clinic is the one that my >> daughter was evaluated at as well and had a very similar experience. I >> have heard that the Rochester clinic is better. >> >> Thanks for sharing Holly, it's so important for everyone to hear. And also >> Mayo may be great for certain illnesses and not so much for Still's?? >> >> Peace, Joy , and Love, >> >> >> >> >To: Stillsdisease >> >Sent: Saturday, July 14, 2012 11:16 AM >> >> >Subject: Re: Re:Hello Fran/ >> > >> >Hi everyone, >> >I've noticed several people waiting for Mayo Clinic appointments, and >> >wanted to share my experience with the Mayo Clinic in sdale, AZ. I >> >was sent there by my rheumy to see what they thought was going on. He had >> >already decided we were probably dealing with Stills, but wanted their >> >opinion and recommendations. >> >I saw a woman there who was very dismissive, and basically told me all my >> >symptoms would go away if I lost weight and exercised more. I asked her >> if >> >she thought the high fevers and painful everything were really related to >> >my weight (170 lbs., then) and she said, 'yes.' But she thought the fevers >> >might be the flu. Uh huh. So, I get the flu every two weeks or so, for 8 >> >years?! >> >So, there you have it, folks... everyone needs to exercise and drop some >> >pounds and we'll all be just fine. >> >Needless to say, I was very disappointed and very upset and got on the >> next >> >plane home. After telling my then rheumy about it, he got me in to the >> >University of Colorado Hospital in Denver where they immediately diagnosed >> >Stills and started me on kineret, after trying several other things >> >prescribed by my previous rheumatologist, methotrexate, quinone, and many >> >other things. Kineret has been the best for me overall, after a few false >> >starts with the injections site issues mentioned before. >> >I guess what I'm saying is, don't rely Mayo's reputation to be the answer >> >to your prayers. The Rochester clinic may be better than the sdale >> >one, at least I hope so, but the University Hospitals seem to know as >> much >> >as anybody as far as I can see. >> >That's not in any way to discourage people, I hope everyone can find >> >excellent care. I just think Mayo clinics have been held up as the >> paragon >> >of medical excellence, and I think that people need to value their own >> >opinion rather than rely on reputation. >> >Good luck to everyone, >> >Peace and Blessings to all, >> >*Holly * >> >*hollydorst@...* >> >* >> >> >* >> > >> > >> > >> >On Sat, Jul 14, 2012 at 10:53 AM, Butterfly Chaser < >> >butterflychaser999@...> wrote: >> > >> >> ** >> >> >> >> >> >> >> Hi , >> >> You hang in there are I'll be praying for you. Thanks for responding, >> >> even though you are not feeling well sweetie. Just rest and comfort >> >> yourself. >> >> Time will tell, and that's about all we can count on at times. >> >> >> >> My daughter went through Mayo Clinic evaluation for her Still's. >> >> Unfortunately they would not give her a definite dianosis by exclusion >> >> only, so it was a waste of time. She is on her third evaluation now and >> >> likes this new Rheumy. He has her back on Kinert which she always did >> quite >> >> well with. >> >> >> >> I have some roots of family not far form you in Madison, my Italian >> >> Granmother happened to be born in Milliwakee. The family settled from >> >> Italy in that area and fished. Then they relocated to fish the open >> seas in >> >> San Diego where I am not born a second generation and still live here. >> >> >> >> Some day I would like to come visit my roots in WI. Are the winters hard >> >> on you? I can never get cool enough, so a colder climit might do well >> with >> >> me. And I hate heat so much and we have that tropical humid resort type >> >> climate right now. I did sit in the pool yesterday for 2 hours here at >> my >> >> condo, and that helped cool off a bit. >> >> >> >> Best of luck to you honey. Keep taking good care of yourself and keep me >> >> posted on how things are going with you ok? >> >> >> >> Love, Peace, and Joy, >> >> >> >> >> >> >> >> >> >> >> >> >To: " Stillsdisease " <Stillsdisease > >> >> >Sent: Saturday, July 14, 2012 12:17 AM >> >> >Subject: Re: Re:Hello Fran/ >> >> > >> >> > >> >> > >> >> >Hi , So sorry for getting back to you late. I haven't been feeling >> >> well. Still having such pain with the bladder infection and the fatigue >> is >> >> horrible! I can't stand it. It makes every day life a struggle. Just >> for me >> >> to get ready to go to my Rhem this morning took me over two hours. To >> >> answer your questions,hun, I've been on cortisone injections before and >> >> prednisone and now methotrioxate for the stills. Yet when I went to see >> my >> >> specialist today I still complained of the constant pain and burning I >> was >> >> having,lower right back pain and sharp pain in the pelvic area. She >> agreed >> >> to have me stop taking the Methotrioxate, seeing as I have an >> infection.Or >> >> do I? She said the culture came back negative...so why am I on Cipro >> then? >> >> And not to mention for the tenth billion time. No one seems to have >> >> answers. The Urologist in Madison actually said that this was all >> related >> >> to my stills yet my Rhem specialist didn't agree. So now I have a appt >> for a >> >> >Immunologist but can't get in until Oct 3rd. I'm also on a waiting list >> >> for MAYO for up to six months. I don't have the best insurance. (sigh) >> I've >> >> never had my adrenal glands checked. I know back in 09 I had to have a >> >> biopsy on my Thyroid Nodules. It came back fine. I really appreciate the >> >> advice and suggestions you've made and will look further into this. >> THANK >> >> YOU SO MUCH!!!!!!!! My point is I don't know why all these doctors >> continue >> >> to push these antibiotics on me when they just don't work. I've become >> so >> >> depressed this past year or so and losing hope in the medical system. >> I'm >> >> even thinking that since I'm gonna be going to UW in Madison to just >> start >> >> all over and get second opinions maybe even third. Can't hurt. Again, >> >> thanks so kindly. Truly, >> >> > >> >> > >> >> > >> >> >________________________________ >> >> >From: Butterfly Chaser <mailto:butterflychaser999%40yahoo.com> >> >> >To: " mailto:Stillsdisease%40yahoogroups.com " <mailto: >> >> Stillsdisease%40yahoogroups.com> >> >> >Sent: Wednesday, July 11, 2012 1:56 AM >> >> >Subject: Re: Re:Hello Fran/ >> >> > >> >> > >> >> > >> >> >Hi, >> >> >Yes I have a suggestion for you. It might do you well to have them >> check >> >> your adrenal glands to make sure they are funcitoning well enough in a >> >> crisis. When the body gets an infection or calls on extra cortisol, >> there >> >> has to be enough in your adrenal reserves to cover the extra need for >> >> energy to fight what ever in a lot of cases bladder infecitons that are >> not >> >> obvious yet. >> >> > >> >> >Your symptoms sound a lot like adrenal insufficiency. Were you using >> >> corticosteroids in your life at any time or usng them now? >> >> > >> >> >Let us know how you are doing ok? >> >> > >> >> > >> >> > >> >> >From: manfredini <mailto:vbm1972%40yahoo.com> >> >> >>To: " mailto:Stillsdisease%40yahoogroups.com " <mailto: >> >> Stillsdisease%40yahoogroups.com> >> >> >>Sent: Monday, July 9, 2012 12:21 AM >> >> >>Subject: Re: Re:Hello Fran >> >> >> >> >> >> >> >> >> >> >> >>Hi , and everyone else. I have only posted once. Mainly because >> >> I've been in out of the hospitals lately. I just got married a few weeks >> >> ago and landed back in the hospital the day before the fourth of July. I >> >> had fainted and right in front of my hubby and complained of migraines >> and >> >> had fevers and feeling fatigued all day. I woke up to finding four >> >> paramedics in my home and rushed to the E.R. Once there many tests were >> >> performed and once again they ran the usual tests along with the >> cultures >> >> to test for any bacterias for a UTI bladder inf etc..of course it came >> back >> >> for a bladder infection. As i've been fighting these for over a year >> and a >> >> half now. I'm at the point where my fatigue,constant lower back >> pain,joint >> >> pain,chills,spiking fevers,rashes,and chronic migraines have me >> wondering >> >> if this truly is ADULT STILLS DISEASE and not something else. I've been >> to >> >> every specialist out there. I've exhausted them all. I've now started >> on a >> >> waiting list >> >> >>with the MAYO CLINIC and was told it would be six months. So now I am >> >> pretty much a advocate for myself. I'm feeling all alone in this and >> don't >> >> know what to think. I'm always in pain. Depressed and losing hope. I >> use to >> >> love my job and looked forward to working and now I have hired a lawyer >> and >> >> looked into collecting disability. I never thought this would be my >> life. >> >> It's frustrating. I am looking to get a second a opinion from U.W. I >> feel >> >> the CIPRO they have put me back on will not have any affect on me. The >> >> methotrioxate has helped with the flare ups to some degree I must add. I >> >> free in some areas it has helped. Any suggestions or ideas would be >> greatly >> >> appreciated. Thank you so kindly...Take Care... >> >> >> >> >> >>________________________________ >> >> >>From: Francesca Fair <mailto:francescafair%40hotmail.co.uk> >> >> >>To: Stills Disease <mailto:stillsdisease%40yahoogroups.com> >> >> >>Sent: Friday, July 6, 2012 3:00 AM >> >> >>Subject: RE: Re:Hello Fran >> >> >> >> >> >> >> >> >> >> >> >> >> >> >>Dear , I'm so sorry it has taken me a while to write you. Like >> >> Holly, my heart hurt when I read about how alone you feel, and I think >> you >> >> are really brave to talk about that here. Functioning every day just >> feels >> >> like an uphill fight, doesn't it? It took me a long time to realise that >> >> part of my problem with that was I was " fighting the fight, " if that >> makes >> >> sense? Punishing myself when I can't do things, either by forcing >> myself to >> >> do them - and suffering even more for it - or being angry / upset / >> >> depressed about them...feeling as though I had failed. OK: here's the >> >> grandmother and eggs story - d'all use that phrase??? " Teaching your >> >> Grandmother to suck eggs " ? One of the biggest things I have learned from >> >> this family is about pacing and planning. And, I don't get it right - I >> >> haven't got it right this past two weeks and landed myself in a big mess >> >> (hence the delay in replying....). There is a good section on this on >> the >> >> Stills Foundation >> >> >>website, and it does take practise and diligence. Oh so easy to throw >> >> the plan out of the window when you are having a " good " day, right? And >> >> then again, somedays you will have the grand plan, and have it all >> mapped >> >> out but it goes pear shaped. What am I trying to say here? A skeleton >> plan, >> >> whether that's by day or by week, whatever you can manage, is something >> >> that works for me - and remembering to give yourself a pat on the back >> is >> >> an important part of that. At the same time, it is only skeleton and if >> it >> >> doesn't work out, it doesn't work out and you have not failed. In fact, >> you >> >> have won by perhaps curtailing the plan, or ditching something from it >> >> altogether, because you have recognised it's too much and reigned >> yourself >> >> in. I wonder how other peoples' planning goes and works out? My big >> lesson >> >> the last two weeks - I still cannot cope with incorporating the >> unexpected. >> >> I think I can / thought I could, but I can't. Furthermore, I need to be >> >> >>firmer with others in saying " no, I can't do that. Thank you, that's a >> >> lovely idea, but no. " It's not letting them down, it's not letting >> yourself >> >> down. You are being kind to yourself. Which I suppose brings me on to >> other >> >> people and the sense of isolation. Ach, , I just don't know what >> to >> >> say. It must be so hard for friends and family who one minute see us >> being >> >> " ok " (I'm sure you have the cover up down as well as the rest of us), >> and >> >> the next minute in a complete mess. On the other side, I know I feel >> that >> >> one minute they are understanding and I am overwhelmed by their >> kindesses, >> >> the next, I feel so hurt by an apparent lack of understanding and I am >> >> screaming inside " why can't you see? Why do you make me spell this out >> to >> >> you every, single time? " What is your situation, ? Do you live >> alone, >> >> or with family? What's the set up? I wonder if it would be useful to >> hear >> >> from friends / family - their story? It would seem like a timely >> >> >>moment for that if there is anyone out there prepared to offer their >> >> perspective or experiences. Hugs to you all - and you are not alone, >> >> . I'm so sorry it took me a while to reply. Please do let us know >> how >> >> you are going. Fran x >> >> >>To: mailto:Stillsdisease%40yahoogroups.com >> >> >>From: mailto:angela6_21%40hotmail.com >> >> >>Date: Tue, 26 Jun 2012 02:34:34 +0000 >> >> >>Subject: Re:Hello Fran >> >> >> >> >> >>Honestly Fran I don't know how I function day in and day out. At times >> >> when I am surrounded by people I feel very much alone. No one around me >> >> understands what I feel or go through except this group of people. >> >> >> >> >> >>. >> >> >> >> >> >> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 30, 2012 It took me a while to get an " official " diagnosis, and to date my " BIG 3 " Dr's still think there may be something besides Stills at work as they don't want to connect the devastating headaches to the Stills Diagnosis, and it will be 10 years in January since I went down hard. As far as disability is concerned, I know how financially devastating and how stressful this is, but you must fight on! Having a lawyer is what many wind up doing but make sure to get a copy of every single medical record you can, even IF you have to pay for them as they will speak volumes about what your concerns are. Best of luck, Kirk. > ** > > > Dear , > > Sometimes people do get dual diagnoses or their diagnoses’ are changed and > it may happen with years in between. I would suggest if you have the > ability to get a second opinion maybe you would want to consider that? > > As for applying for disability, it often happens that people get turned > down especially when the diagnoses isn’t clear. Getting a lawyer can help > in the process and getting copies of your records or files may also help > the process. > > We wish you success and I want to say you are always welcome here for > support whatever your disease is. Please keep us updated on how you are > doing. > > Many hugs, > > From: Lbrasero > > My name is and I was dx with aosd in Jan. after ruling out Lymphoma > and Hodgkins disease. My rheum. now says because biopsies from my Lymph > nodes showed necrotizing granulomatous Lymphadenitis, It is not stills and > it was probably an infectious process. The problem is that I still am > having joint pain and extreme fatigue. She also has me on plaquenil. I > haven't had fever or weight loss since feb. I don't feel much difference > with the plaquenil. Has anyone else had a similiar experience? I'm very > confused , I don't feel well and I haven't worked since nov. I applied for > disability and was turned down twice and now have a lawyer.If anyone else > has had a similiar experience please let me know. Thank you! > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 30, 2012 Thank you so much for the encouragement. I will look for a second opinion as you suggested . I do have an appointment today with my rheum. to evaluate the plaquenil which I started at the beginning of aug. Thanks! Hello  Dear , Sometimes people do get dual diagnoses or their diagnoses’ are changed and it may happen with years in between. I would suggest if you have the ability to get a second opinion maybe you would want to consider that? As for applying for disability, it often happens that people get turned down especially when the diagnoses isn’t clear. Getting a lawyer can help in the process and getting copies of your records or files may also help the process. We wish you success and I want to say you are always welcome here for support whatever your disease is. Please keep us updated on how you are doing. Many hugs, From: Lbrasero My name is and I was dx with aosd in Jan. after ruling out Lymphoma and Hodgkins disease. My rheum. now says because biopsies from my Lymph nodes showed necrotizing granulomatous Lymphadenitis, It is not stills and it was probably an infectious process. The problem is that I still am having joint pain and extreme fatigue. She also has me on plaquenil. I haven't had fever or weight loss since feb. I don't feel much difference with the plaquenil. Has anyone else had a similiar experience? I'm very confused , I don't feel well and I haven't worked since nov. I applied for disability and was turned down twice and now have a lawyer.If anyone else has had a similiar experience please let me know. Thank you! Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 30, 2012 Thank you so much for the encouragement. I will look for a second opinion as you suggested . I do have an appointment today with my rheum. to evaluate the plaquenil which I started at the beginning of aug. Thanks! Hello  Dear , Sometimes people do get dual diagnoses or their diagnoses’ are changed and it may happen with years in between. I would suggest if you have the ability to get a second opinion maybe you would want to consider that? As for applying for disability, it often happens that people get turned down especially when the diagnoses isn’t clear. Getting a lawyer can help in the process and getting copies of your records or files may also help the process. We wish you success and I want to say you are always welcome here for support whatever your disease is. Please keep us updated on how you are doing. Many hugs, From: Lbrasero My name is and I was dx with aosd in Jan. after ruling out Lymphoma and Hodgkins disease. My rheum. now says because biopsies from my Lymph nodes showed necrotizing granulomatous Lymphadenitis, It is not stills and it was probably an infectious process. The problem is that I still am having joint pain and extreme fatigue. She also has me on plaquenil. I haven't had fever or weight loss since feb. I don't feel much difference with the plaquenil. Has anyone else had a similiar experience? I'm very confused , I don't feel well and I haven't worked since nov. I applied for disability and was turned down twice and now have a lawyer.If anyone else has had a similiar experience please let me know. Thank you! Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 30, 2012 Thank you so much for the encouragement. I will look for a second opinion as you suggested . I do have an appointment today with my rheum. to evaluate the plaquenil which I started at the beginning of aug. Thanks! Hello  Dear , Sometimes people do get dual diagnoses or their diagnoses’ are changed and it may happen with years in between. I would suggest if you have the ability to get a second opinion maybe you would want to consider that? As for applying for disability, it often happens that people get turned down especially when the diagnoses isn’t clear. Getting a lawyer can help in the process and getting copies of your records or files may also help the process. We wish you success and I want to say you are always welcome here for support whatever your disease is. Please keep us updated on how you are doing. Many hugs, From: Lbrasero My name is and I was dx with aosd in Jan. after ruling out Lymphoma and Hodgkins disease. My rheum. now says because biopsies from my Lymph nodes showed necrotizing granulomatous Lymphadenitis, It is not stills and it was probably an infectious process. The problem is that I still am having joint pain and extreme fatigue. She also has me on plaquenil. I haven't had fever or weight loss since feb. I don't feel much difference with the plaquenil. Has anyone else had a similiar experience? I'm very confused , I don't feel well and I haven't worked since nov. I applied for disability and was turned down twice and now have a lawyer.If anyone else has had a similiar experience please let me know. Thank you! Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 30, 2012 ________________________________ To: Stillsdisease Sent: Thursday, August 30, 2012 9:17 AM Subject: Re: Hello Hi , I relate to what you're going through. I have also filed for disability as well and I have a lawyer. I was told back in Dec that I possibly could have Adult Stills Disease,and it was confirmed in Feb that is for certain that I have Stills. I too have a lot of joint pain,fatigue,and every few days my fever will spike. I haven't posted much because I've been fighting constant UTI's which are so much more worse to cope and deal with then the Stills. ''in my opinion'' at least the Methotrioxate helps and the lyrica...and my pain rate went from a high 9 to a low 5. I hope you get approved and wish you all the best on your ventures with getting disability. This is my first time applying so we'll see what happens. Please keep us updated on how you're doing.This is truly a wonderful group of people and the support you'll receive here is fantastic to say the least.... Take care....blessings...  Thank you so much for the encouragement. I will look for a second opinion as you suggested . I do have an appointment today with my rheum. to evaluate the plaquenil which I started at the beginning of aug. Thanks! Hello  Dear , Sometimes people do get dual diagnoses or their diagnoses’ are changed and it may happen with years in between. I would suggest if you have the ability to get a second opinion maybe you would want to consider that? As for applying for disability, it often happens that people get turned down especially when the diagnoses isn’t clear. Getting a lawyer can help in the process and getting copies of your records or files may also help the process. We wish you success and I want to say you are always welcome here for support whatever your disease is. Please keep us updated on how you are doing. Many hugs, From: Lbrasero My name is and I was dx with aosd in Jan. after ruling out Lymphoma and Hodgkins disease. My rheum. now says because biopsies from my Lymph nodes showed necrotizing granulomatous Lymphadenitis, It is not stills and it was probably an infectious process. The problem is that I still am having joint pain and extreme fatigue. She also has me on plaquenil. I haven't had fever or weight loss since feb. I don't feel much difference with the plaquenil. Has anyone else had a similiar experience? I'm very confused , I don't feel well and I haven't worked since nov. I applied for disability and was turned down twice and now have a lawyer.If anyone else has had a similiar experience please let me know. Thank you! Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 30, 2012 ________________________________ To: Stillsdisease Sent: Thursday, August 30, 2012 9:17 AM Subject: Re: Hello Hi , I relate to what you're going through. I have also filed for disability as well and I have a lawyer. I was told back in Dec that I possibly could have Adult Stills Disease,and it was confirmed in Feb that is for certain that I have Stills. I too have a lot of joint pain,fatigue,and every few days my fever will spike. I haven't posted much because I've been fighting constant UTI's which are so much more worse to cope and deal with then the Stills. ''in my opinion'' at least the Methotrioxate helps and the lyrica...and my pain rate went from a high 9 to a low 5. I hope you get approved and wish you all the best on your ventures with getting disability. This is my first time applying so we'll see what happens. Please keep us updated on how you're doing.This is truly a wonderful group of people and the support you'll receive here is fantastic to say the least.... Take care....blessings...  Thank you so much for the encouragement. I will look for a second opinion as you suggested . I do have an appointment today with my rheum. to evaluate the plaquenil which I started at the beginning of aug. Thanks! Hello  Dear , Sometimes people do get dual diagnoses or their diagnoses’ are changed and it may happen with years in between. I would suggest if you have the ability to get a second opinion maybe you would want to consider that? As for applying for disability, it often happens that people get turned down especially when the diagnoses isn’t clear. Getting a lawyer can help in the process and getting copies of your records or files may also help the process. We wish you success and I want to say you are always welcome here for support whatever your disease is. Please keep us updated on how you are doing. Many hugs, From: Lbrasero My name is and I was dx with aosd in Jan. after ruling out Lymphoma and Hodgkins disease. My rheum. now says because biopsies from my Lymph nodes showed necrotizing granulomatous Lymphadenitis, It is not stills and it was probably an infectious process. The problem is that I still am having joint pain and extreme fatigue. She also has me on plaquenil. I haven't had fever or weight loss since feb. I don't feel much difference with the plaquenil. Has anyone else had a similiar experience? I'm very confused , I don't feel well and I haven't worked since nov. I applied for disability and was turned down twice and now have a lawyer.If anyone else has had a similiar experience please let me know. Thank you! Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 30, 2012 Thank you for the encouragement. I certainly need it at this point. I can relate to the constant uti' s because that was something I was dealing with as well for about 6 or 7 months. I am very fortunate because they seem to have resolved. I hope yours resolve soon as well. It took quite a few rounds of abx but finally the bactrim did work. I wish you luck with your case as well. I won't have a hearing until may 2013 according to my lawyer. They say all I can do is keep going to my Dr. and keeping them informed of any cha nges.  I'm glad your pain level has improved . I saw my Dr. today and she wants me to continue on low dose prednisone 5mg daily and plaquenil 400mg to 600mg as tolerated . She also is starting me on cymbalta 30mg daily for the depression and possibly to help with the pain. She says it takes up to 12 weeks for the effects of the plaquenil to kick in and I've been on it for only 4 weeks .. She'll reevaluate in 6 weeks and may be then try methotrexate. I so appreciate your good wishes and it is so good to have contact with others who understand what I'm going through. God Bless You Hello  Dear , Sometimes people do get dual diagnoses or their diagnoses’ are changed and it may happen with years in between. I would suggest if you have the ability to get a second opinion maybe you would want to consider that? As for applying for disability, it often happens that people get turned down especially when the diagnoses isn’t clear. Getting a lawyer can help in the process and getting copies of your records or files may also help the process. We wish you success and I want to say you are always welcome here for support whatever your disease is. Please keep us updated on how you are doing. Many hugs, From: Lbrasero My name is and I was dx with aosd in Jan. after ruling out Lymphoma and Hodgkins disease. My rheum. now says because biopsies from my Lymph nodes showed necrotizing granulomatous Lymphadenitis, It is not stills and it was probably an infectious process. The problem is that I still am having joint pain and extreme fatigue. She also has me on plaquenil. I haven't had fever or weight loss since feb. I don't feel much difference with the plaquenil. Has anyone else had a similiar experience? I'm very confused , I don't feel well and I haven't worked since nov. I applied for disability and was turned down twice and now have a lawyer.If anyone else has had a similiar experience please let me know. Thank you! Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 30, 2012 Thank you for the encouragement. I certainly need it at this point. I can relate to the constant uti' s because that was something I was dealing with as well for about 6 or 7 months. I am very fortunate because they seem to have resolved. I hope yours resolve soon as well. It took quite a few rounds of abx but finally the bactrim did work. I wish you luck with your case as well. I won't have a hearing until may 2013 according to my lawyer. They say all I can do is keep going to my Dr. and keeping them informed of any cha nges.  I'm glad your pain level has improved . I saw my Dr. today and she wants me to continue on low dose prednisone 5mg daily and plaquenil 400mg to 600mg as tolerated . She also is starting me on cymbalta 30mg daily for the depression and possibly to help with the pain. She says it takes up to 12 weeks for the effects of the plaquenil to kick in and I've been on it for only 4 weeks .. She'll reevaluate in 6 weeks and may be then try methotrexate. I so appreciate your good wishes and it is so good to have contact with others who understand what I'm going through. God Bless You Hello  Dear , Sometimes people do get dual diagnoses or their diagnoses’ are changed and it may happen with years in between. I would suggest if you have the ability to get a second opinion maybe you would want to consider that? As for applying for disability, it often happens that people get turned down especially when the diagnoses isn’t clear. Getting a lawyer can help in the process and getting copies of your records or files may also help the process. We wish you success and I want to say you are always welcome here for support whatever your disease is. Please keep us updated on how you are doing. Many hugs, From: Lbrasero My name is and I was dx with aosd in Jan. after ruling out Lymphoma and Hodgkins disease. My rheum. now says because biopsies from my Lymph nodes showed necrotizing granulomatous Lymphadenitis, It is not stills and it was probably an infectious process. The problem is that I still am having joint pain and extreme fatigue. She also has me on plaquenil. I haven't had fever or weight loss since feb. I don't feel much difference with the plaquenil. Has anyone else had a similiar experience? I'm very confused , I don't feel well and I haven't worked since nov. I applied for disability and was turned down twice and now have a lawyer.If anyone else has had a similiar experience please let me know. Thank you! Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 30, 2012 Thank you for the encouragement. I certainly need it at this point. I can relate to the constant uti' s because that was something I was dealing with as well for about 6 or 7 months. I am very fortunate because they seem to have resolved. I hope yours resolve soon as well. It took quite a few rounds of abx but finally the bactrim did work. I wish you luck with your case as well. I won't have a hearing until may 2013 according to my lawyer. They say all I can do is keep going to my Dr. and keeping them informed of any cha nges.  I'm glad your pain level has improved . I saw my Dr. today and she wants me to continue on low dose prednisone 5mg daily and plaquenil 400mg to 600mg as tolerated . She also is starting me on cymbalta 30mg daily for the depression and possibly to help with the pain. She says it takes up to 12 weeks for the effects of the plaquenil to kick in and I've been on it for only 4 weeks .. She'll reevaluate in 6 weeks and may be then try methotrexate. I so appreciate your good wishes and it is so good to have contact with others who understand what I'm going through. God Bless You Hello  Dear , Sometimes people do get dual diagnoses or their diagnoses’ are changed and it may happen with years in between. I would suggest if you have the ability to get a second opinion maybe you would want to consider that? As for applying for disability, it often happens that people get turned down especially when the diagnoses isn’t clear. Getting a lawyer can help in the process and getting copies of your records or files may also help the process. We wish you success and I want to say you are always welcome here for support whatever your disease is. Please keep us updated on how you are doing. Many hugs, From: Lbrasero My name is and I was dx with aosd in Jan. after ruling out Lymphoma and Hodgkins disease. My rheum. now says because biopsies from my Lymph nodes showed necrotizing granulomatous Lymphadenitis, It is not stills and it was probably an infectious process. The problem is that I still am having joint pain and extreme fatigue. She also has me on plaquenil. I haven't had fever or weight loss since feb. I don't feel much difference with the plaquenil. Has anyone else had a similiar experience? I'm very confused , I don't feel well and I haven't worked since nov. I applied for disability and was turned down twice and now have a lawyer.If anyone else has had a similiar experience please let me know. Thank you! Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 30, 2012 Hi and group, I don't know if anyone told you but plaquenil (sp?) takes like 6 months to build up in your body for it to start working. So, it will take that long before you can start feeling it. Maybe 3-4 months at the earliest. It's not that long in the end game but when your hurting it's long. Your doctor may also have you get your eyes check on a yearly to every other basis. It's just to look (ha ha) for a side effect. It's a precaution, so worries. Hugs, J.J. Sent from my iPhone > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 30, 2012 Hi and group, I don't know if anyone told you but plaquenil (sp?) takes like 6 months to build up in your body for it to start working. So, it will take that long before you can start feeling it. Maybe 3-4 months at the earliest. It's not that long in the end game but when your hurting it's long. Your doctor may also have you get your eyes check on a yearly to every other basis. It's just to look (ha ha) for a side effect. It's a precaution, so worries. Hugs, J.J. Sent from my iPhone > Quote Share this post Link to post Share on other sites
