Comments for Reiter's Info/Support Group. Encompassing all the Spondyloarthropathies. http://risg.org/blog You're not alone! Thu, 29 Jul 2010 03:06:38 -0700 hourly 1 http://wordpress.org/?v=3.0.1 Comment on RISG.ORG Current News 01-01-2010 by noni juice http://risg.org/blog/?p=1364&cpage=1#comment-3540 noni juice Thu, 29 Jul 2010 03:06:38 +0000 http://risg.org/blog/?p=1364#comment-3540 Very Interesting Information! Thank You For Thi Blog! Very Interesting Information! Thank You For Thi Blog!

]]> Comment on Physicians by Region by Raphaelle O'Neil http://risg.org/blog/?page_id=228&cpage=1#comment-2224 Raphaelle O'Neil Thu, 08 Apr 2010 21:01:56 +0000 http://risg.org/blog/?page_id=228#comment-2224 I was diagnosed with Reactive Arthritis at 28. Being a starving artist, it took months to get into the charity hospital system (pre-Katrina), and when I finally did, the doctor told me to "stop sleeping around"- BEFORE giving me an STD test. At the time, I was disabled for 6 months, took meds for 2 yrs. before being totally free of symptoms. They never found an STD, but I took meds for 3 months anyway. Then last year, at 34 yrs. it came back. This time I refused to become disabled and lose my home and work again while I applied and waited the extra long wait to get into the new (post-K) free care system , so I had a doctor friend (non-rheumatologist) give me the Indomethacin and Sulfasalazine that had worked the first time. Almost a year later, I get in to see the doctor, and he doesn't answer any of my questions or want to run any tests, but suggests putting me on 6 months worth of antibiotics this time, because I'm sexually active, and PROBABLY have an STD (chances are good that it's the same doctor I had the first time). I insisted to have an STD test, and tested negative Gonorrhea and Syphilis DNA tests. Here's the deal- both times at onset I had Streptococcal infections that would return after antibiotics. I had mentioned this to all doctors I ever saw, and not a one ever mentioned there could be a connection. I only recently discovered that there is such a thing as post-streptococcal reactive arthritis by using Google. Is there a doctor in the New Orleans area that someone can recommend, or anywhere else for that matter, if he consults by phone? I have so many questions that require a knowledgable, and compassionate human being. Please feel free to call me, too, with any info. 504-975-0054 I was diagnosed with Reactive Arthritis at 28. Being a starving artist, it took months to get into the charity hospital system (pre-Katrina), and when I finally did, the doctor told me to “stop sleeping around”- BEFORE giving me an STD test. At the time, I was disabled for 6 months, took meds for 2 yrs. before being totally free of symptoms. They never found an STD, but I took meds for 3 months anyway. Then last year, at 34 yrs. it came back. This time I refused to become disabled and lose my home and work again while I applied and waited the extra long wait to get into the new (post-K) free care system , so I had a doctor friend (non-rheumatologist) give me the Indomethacin and Sulfasalazine that had worked the first time. Almost a year later, I get in to see the doctor, and he doesn’t answer any of my questions or want to run any tests, but suggests putting me on 6 months worth of antibiotics this time, because I’m sexually active, and PROBABLY have an STD (chances are good that it’s the same doctor I had the first time). I insisted to have an STD test, and tested negative Gonorrhea and Syphilis DNA tests. Here’s the deal- both times at onset I had Streptococcal infections that would return after antibiotics. I had mentioned this to all doctors I ever saw, and not a one ever mentioned there could be a connection. I only recently discovered that there is such a thing as post-streptococcal reactive arthritis by using Google. Is there a doctor in the New Orleans area that someone can recommend, or anywhere else for that matter, if he consults by phone? I have so many questions that require a knowledgable, and compassionate human being. Please feel free to call me, too, with any info. 504-975-0054

]]> Comment on Support by Adrian kaidhaas http://risg.org/blog/?page_id=15&cpage=1#comment-2193 Adrian kaidhaas Sun, 21 Mar 2010 00:16:02 +0000 http://risg.org/blog/?page_id=15#comment-2193 Hi, i have been dealing with reiters syndrome since 1988, I have had several doctors that backed the decision, but my main Insurance, the VA, totally denies it. They say that it has gone away, however i deal with it on a daily basis, my eyes hae burned for about ten days at a time, I have a type of urinarytract infection from time to time, my bones are fusing together in my back and knees, and i have extreme pain in my feet, if i stand for a period of time. The Va denies that i have it, and says that there is no test to verify it. Help!!!! al I have take is Ibuprofin, some times up to six capsules at a time. Hi, i have been dealing with reiters syndrome since 1988, I have had several doctors that backed the decision, but my main Insurance, the VA, totally denies it. They say that it has gone away, however i deal with it on a daily basis, my eyes hae burned for about ten days at a time, I have a type of urinarytract infection from time to time, my bones are fusing together in my back and knees, and i have extreme pain in my feet, if i stand for a period of time. The Va denies that i have it, and says that there is no test to verify it. Help!!!!
al I have take is Ibuprofin, some times up to six capsules at a time.

]]> Comment on Physicians by Region by Rick Hahn http://risg.org/blog/?page_id=228&cpage=1#comment-2170 Rick Hahn Sat, 13 Mar 2010 01:25:07 +0000 http://risg.org/blog/?page_id=228#comment-2170 Rick tell him to go to Iowa City. There are alot of good doctors connected with the university hospital there:) Liz Kilpatrick a href="#comment-2151">@Gar Will</a> Rick tell him to go to Iowa City. There are alot of good doctors connected with the university hospital there:)
Liz Kilpatrick

a href=”#comment-2151″>@Gar Will

]]> Comment on Physicians by Region by Gar Will http://risg.org/blog/?page_id=228&cpage=1#comment-2151 Gar Will Wed, 10 Mar 2010 06:44:02 +0000 http://risg.org/blog/?page_id=228#comment-2151 Does any one know of a doctor that treats reiters in the Cedar Rapids / Iowa City area. I just moved to the area and my symptoms got a lot worst. Does any one know of a doctor that treats reiters in the Cedar Rapids / Iowa City area. I just moved to the area and my symptoms got a lot worst.

]]> Comment on Physicians by Region by Virginia Bucci http://risg.org/blog/?page_id=228&cpage=1#comment-1392 Virginia Bucci Fri, 16 Oct 2009 20:58:34 +0000 http://risg.org/blog/?page_id=228#comment-1392 <a href="#comment-1140" rel="nofollow">@Dorene472 </a> dorene sorry I'm having trouble navigating the new site so I only just saw this. hope you're still reading. My young-adult son was dg Reiter's when 10 y.o. by pediatric rheumatologist Yukiku Kimura at Children's Specialized of Hackensack U hospital in 1998. When Reiter's began flaring very badly in 2006, we tried a couple on our Aetna insurance, as well as a couple of urologists. Tho the pediatric rheum. & ped urol (at Overlook in Summit) were excellent, we were very disappointed with the complete lack of info/help from the doctors for adults as we searched in 07-08. Finally I thought to contact Kimura's office (we hadn't seen her in yrs as the disease was very mild until his late teens)-- asked who they send their ped patients to at age 18. The office only recommends 2 rheum's, both in northern NJ. We now see at their recommendation Dr Gilbert Kepecs in Hackensack NJ. As good as they come. They also recommend a woman dr in Franklin Lakes area (I think), whose name I have forgotten. But you could call Kimura's office & ask who they like for adults. Kimura is widely & well-reputed up & down the east coast as I understand it, so anyone they like will be good. (She was able to dg Reiter's in one visit; we had been getting dg of "synovitis" since he was 3 y.o.-- 7 yrs at that point (he would get pain/ limping in one hip or other after a bad cold or virus). @Dorene472

dorene sorry I’m having trouble navigating the new site so I only just saw this. hope you’re still reading. My young-adult son was dg Reiter’s when 10 y.o. by pediatric rheumatologist Yukiku Kimura at Children’s Specialized of Hackensack U hospital in 1998. When Reiter’s began flaring very badly in 2006, we tried a couple on our Aetna insurance, as well as a couple of urologists. Tho the pediatric rheum. & ped urol (at Overlook in Summit) were excellent, we were very disappointed with the complete lack of info/help from the doctors for adults as we searched in 07-08. Finally I thought to contact Kimura’s office (we hadn’t seen her in yrs as the disease was very mild until his late teens)– asked who they send their ped patients to at age 18. The office only recommends 2 rheum’s, both in northern NJ. We now see at their recommendation Dr Gilbert Kepecs in Hackensack NJ. As good as they come. They also recommend a woman dr in Franklin Lakes area (I think), whose name I have forgotten. But you could call Kimura’s office & ask who they like for adults. Kimura is widely & well-reputed up & down the east coast as I understand it, so anyone they like will be good. (She was able to dg Reiter’s in one visit; we had been getting dg of “synovitis” since he was 3 y.o.– 7 yrs at that point (he would get pain/ limping in one hip or other after a bad cold or virus).

]]> Comment on Physicians by Region by Dorene472 http://risg.org/blog/?page_id=228&cpage=1#comment-1140 Dorene472 Fri, 25 Sep 2009 17:44:03 +0000 http://risg.org/blog/?page_id=228#comment-1140 I am looking for a Rheumatologist in NJ, preferably Central NJ. I see a pain clinic dr., a general physician, a cardiologist and an orthopedic dr. They toss me back and forth like a hot potatoe. I am 51, female, with iritis, sacroileitis, pancreatitis and now the pain in my back is moving upwards as well. This past sev. days I have not gone to my very part time job or anywhere else. I holler when I have to move or even just sitting still. Today is better so I can focus enough to type. I appreciate any help you can provide. Thank you, Dorene in NJ I am looking for a Rheumatologist in NJ, preferably Central NJ. I see a pain clinic dr., a general physician, a cardiologist and an orthopedic dr. They toss me back and forth like a hot potatoe. I am 51, female, with iritis, sacroileitis, pancreatitis and now the pain in my back is moving upwards as well. This past sev. days I have not gone to my very part time job or anywhere else. I holler when I have to move or even just sitting still. Today is better so I can focus enough to type. I appreciate any help you can provide. Thank you, Dorene in NJ

]]> Comment on Cramping and bowel changes have you running too frequently to the toilet? Here are ten tips that can help ease IBS. by Crohns Disease http://risg.org/blog/?page_id=711&cpage=1#comment-509 Crohns Disease Wed, 08 Jul 2009 11:21:37 +0000 http://risg.org/blog/?page_id=711#comment-509 I'm very afraid about crohn's disease. I have some symtoms in abdominal pain, often in the lower right area, and diarrhea. Should I go to see the doctor? Please help. I’m very afraid about crohn’s disease. I have some symtoms in abdominal pain, often in the lower right area, and diarrhea. Should I go to see the doctor? Please help.

]]> Comment on RISG.ORG Current News 02-13-09 by Crohns Disease http://risg.org/blog/?p=551&cpage=1#comment-508 Crohns Disease Wed, 08 Jul 2009 11:21:20 +0000 http://risg.org/blog/?p=551#comment-508 I'm very afraid about crohn's disease. I have some symtoms in abdominal pain, often in the lower right area, and diarrhea. Should I go to see the doctor? Please help. I’m very afraid about crohn’s disease. I have some symtoms in abdominal pain, often in the lower right area, and diarrhea. Should I go to see the doctor? Please help.

]]> Comment on Support by Elizabeth Davidson http://risg.org/blog/?page_id=15&cpage=1#comment-400 Elizabeth Davidson Fri, 19 Jun 2009 07:09:02 +0000 http://risg.org/blog/?page_id=15#comment-400 Hi, glad to be back.I didn't go too far,just computer problems, and well as we all know health problems. But life continues on. I sure wish more prople would write on this site like they used to. I don't know what happened to everyone? Long vacations or something? I'm too homebound to travel, so have fun if you are out there.My brother has some kind of Arthritis that his bones crumble.Does anyone know the name of that? No matter what I do or meds I take, I am always in pain. I asked him about his pain, and he said the same thing. My son is taking Remicade,and says he has no pain.Lucky him!! I can't take it because of too many infections.And I don't think my brother has talked to the Dr about it. Being pain free would sure be nice. I have Reiter's and a lot of other related stuff, and it just multiplies with time. Life sure is different than I expected it to be in my 'golden years.' It's a farce.Well, I there is anyone still out there besides Rick H., put some input into the group. Thanks, Elizabeth D. in Oregon Hi, glad to be back.I didn’t go too far,just computer problems, and well as we all know health problems. But life continues on. I sure wish more prople would write on this site like they used to. I don’t know what happened to everyone? Long vacations or something? I’m too homebound to travel, so have fun if you are out there.My brother has some kind of Arthritis that his bones crumble.Does anyone know the name of that? No matter what I do or meds I take, I am always in pain. I asked him about his pain, and he said the same thing. My son is taking Remicade,and says he has no pain.Lucky him!! I can’t take it because of too many infections.And I don’t think my brother has talked to the Dr about it. Being pain free would sure be nice. I have Reiter’s and a lot of other related stuff, and it just multiplies with time. Life sure is different than I expected it to be in my ‘golden years.’ It’s a farce.Well, I there is anyone still out there besides Rick H., put some input into the group. Thanks, Elizabeth D. in Oregon

]]> Comment on Physicians by Region by Elizabeth Davidson http://risg.org/blog/?page_id=228&cpage=1#comment-365 Elizabeth Davidson Sat, 13 Jun 2009 05:55:20 +0000 http://risg.org/blog/?page_id=228#comment-365 <a href="#comment-215" rel="nofollow">@ann thomas </a> Ann, My 25 year old son had almost the same symptoms since he was 16. He was in so much pain all those years. He was born with Ulcerative Colitis,but I got that stopped by the time he was 2,but when he started maturing it came back with a vengance. He could hardly walk, and at 24 the UC started bleeding. I got him to a doc who was treating that, but the pain in his hips and back were terrible. Finally we found out he had Ankylosing Spondilitis. It took 3 years to pull strings for him to get the meds, Methotrexate and Remecade infusion. But once he got those, he is doing very well. I have UC,and anything an auto immune disorder can do to a body.I take Methotrexate, Azulfadine,Neurontin and a bunch of other antibiotics and anti depressants. I still have pain, but if I sleep a lot, naps in the day and a good night sleep, the pain isn't as bad.I found a great Dr in Talant,OR. Dr Rudy Greene, if anyone else is looking for one around here. @ann thomas
Ann, My 25 year old son had almost the same symptoms since he was 16. He was in so much pain all those years. He was born with Ulcerative Colitis,but I got that stopped by the time he was 2,but when he started maturing it came back with a vengance. He could hardly walk, and at 24 the UC started bleeding. I got him to a doc who was treating that, but the pain in his hips and back were terrible. Finally we found out he had Ankylosing Spondilitis. It took 3 years to pull strings for him to get the meds, Methotrexate and Remecade infusion. But once he got those, he is doing very well. I have UC,and anything an auto immune disorder can do to a body.I take Methotrexate, Azulfadine,Neurontin and a bunch of other antibiotics and anti depressants. I still have pain, but if I sleep a lot, naps in the day and a good night sleep, the pain isn’t as bad.I found a great Dr in Talant,OR. Dr Rudy Greene, if anyone else is looking for one around here.

]]> Comment on RISG.ORG Current News 06-12-09 by Elizabeth Davidson http://risg.org/blog/?p=1028&cpage=1#comment-364 Elizabeth Davidson Sat, 13 Jun 2009 05:34:19 +0000 http://risg.org/blog/?p=1028#comment-364 Where do I start,well, when I first started having any symptoms of UC,my Drs said it was caused by emotional problems.Then it would continue to go in and out of remission for a long time, and damaging what it wanted.I have gone to so my therapits and treatment centers, and none of it helped this disease.Now 40+ years later,my doc says it is caused by emotions.I don't get it.My mother's aunt which I didn't even know had it, and then my youngest son was born with it. How could it be caused by emotions? I don't get this reasoning the Drs come up with. Anyone have Drs telling them it is emotions? I don't believe it. Elizabeth Where do I start,well, when I first started having any symptoms of UC,my Drs said it was caused by emotional problems.Then it would continue to go in and out of remission for a long time, and damaging what it wanted.I have gone to so my therapits and treatment centers, and none of it helped this disease.Now 40+ years later,my doc says it is caused by emotions.I don’t get it.My mother’s aunt which I didn’t even know had it, and then my youngest son was born with it. How could it be caused by emotions? I don’t get this reasoning the Drs come up with. Anyone have Drs telling them it is emotions? I don’t believe it. Elizabeth

]]> Comment on Physicians by Region by Rick http://risg.org/blog/?page_id=228&cpage=1#comment-217 Rick Sun, 10 May 2009 03:51:22 +0000 http://risg.org/blog/?page_id=228#comment-217 Ann, please join our group. You'll find much more support there. God bless. http://risg.org/blog/?page_id=86 <a href="#comment-215" rel="nofollow">@ann thomas</a> Ann, please join our group. You’ll find much more support there.
God bless.

http://risg.org/blog/?page_id=86

@ann thomas

]]> Comment on Physicians by Region by ann thomas http://risg.org/blog/?page_id=228&cpage=1#comment-215 ann thomas Sat, 09 May 2009 19:33:00 +0000 http://risg.org/blog/?page_id=228#comment-215 Help! My thirty-eight year old son was diagnosed with Reiter's on April 3, 2009 following a bout with what the doctor believes was the flu or food poisoning that started on Friday, March 13. The blood, urine, and stool tests done on April 3 ruled out lupus and chlamydia. On Sunday morning March 29 I noted his eyes were red (conjunctivitis). He was gone from Monday, March 30 to Wednesday night (April 1); therefore, I was unaware of any other symptoms until his excruciating pain on Thursday, April 2. Since his diagnosis on April 3 no medications have really worked. The doctors have prescribed various NSAIDS and pain meds and three courses of prednisone. He has been on crutches and in a wheelchair. Although his pain improved considerably for awhile, he is currently in the bed with muscle spasms in his back; and his feet and ankles are terribly swollen again. In addition he is complaining of his pinkie finger on his left hand hurting him a great deal. I don't believe the doctors know what to do. He has an appointment with a specialist on April 13,, but we would really appreciate any tips/info you can provide. Thank you! Help!
My thirty-eight year old son was diagnosed with Reiter’s on April 3, 2009 following a bout with what the doctor believes was the flu or food poisoning that started on Friday, March 13. The blood, urine, and stool tests done on April 3 ruled out lupus and chlamydia. On Sunday morning March 29 I noted his eyes were red (conjunctivitis). He was gone from Monday, March 30 to Wednesday night (April 1); therefore, I was unaware of any other symptoms until his excruciating pain on Thursday, April 2. Since his diagnosis on April 3 no medications have really worked. The doctors have prescribed various NSAIDS and pain meds and three courses of prednisone. He has been on crutches and in a wheelchair. Although his pain improved considerably for awhile, he is currently in the bed with muscle spasms in his back; and his feet and ankles are terribly swollen again. In addition he is complaining of his pinkie finger on his left hand hurting him a great deal. I don’t believe the doctors know what to do. He has an appointment with a specialist on April 13,, but we would really appreciate any tips/info you can provide.

Thank you!

]]> Comment on RISG.ORG Current News 05-01-09 by AlexAxe http://risg.org/blog/?p=969&cpage=1#comment-202 AlexAxe Sat, 02 May 2009 20:24:38 +0000 http://risg.org/blog/?p=969#comment-202 Hello, risg.org - da best. Keep it going! Hello,
risg.org – da best. Keep it going!

]]> Comment on Related websites our visitors recommend. by Tim http://risg.org/blog/?page_id=614&cpage=1#comment-176 Tim Sun, 19 Apr 2009 19:17:24 +0000 http://risg.org/blog/?page_id=614#comment-176 This site was designed by an AS support group leader for the free use of individuals and organizations that are involved in AS support. It is a communication site designed for live chat, virtual support groups, and shared journaling. We are about communication and mutual live support with each other. If Risg.org would like to use beetlemed.com as your live communication engine for chat, support group and journaling we invite you to link to the two health sections; Ankylosing Spondylitis and Parenting kids with AS sections. This was designed with organizations and people like you in mind. It is 100% Flash technology and took 2 and a half years to build, and it just launched. There are over 260 different health conditions and concerns with two applicable to Risg.org. Feel free to set up chats and support groups. This was designed to be Ad driven so our users will not have to pay for this service. This site was designed by an AS support group leader for the free use of individuals and organizations that are involved in AS support. It is a communication site designed for live chat, virtual support groups, and shared journaling. We are about communication and mutual live support with each other. If Risg.org would like to use beetlemed.com as your live communication engine for chat, support group and journaling we invite you to link to the two health sections; Ankylosing Spondylitis and Parenting kids with AS sections. This was designed with organizations and people like you in mind. It is 100% Flash technology and took 2 and a half years to build, and it just launched. There are over 260 different health conditions and concerns with two applicable to Risg.org. Feel free to set up chats and support groups. This was designed to be Ad driven so our users will not have to pay for this service.

]]> Comment on Related websites our visitors recommend. by Jen Richards http://risg.org/blog/?page_id=614&cpage=1#comment-175 Jen Richards Sun, 19 Apr 2009 16:56:37 +0000 http://risg.org/blog/?page_id=614#comment-175 Hi Friends, If you want a like to a great place to find comfort among friends, go to this website. It was designed by a good friend of mine who has A.S. He suffered for years with a misdiagnosis and after he got help was inspired to design this site. www.beetlemed.com Hope to see you there. Look for Barney Fife under A.S. and leave him a message. Hi Friends,

If you want a like to a great place to find comfort among friends, go to this website. It was designed by a good friend of mine who has A.S. He suffered for years with a misdiagnosis and after he got help was inspired to design this site.

http://www.beetlemed.com

Hope to see you there. Look for Barney Fife under A.S. and leave him a message.

]]> Comment on Cramping and bowel changes have you running too frequently to the toilet? Here are ten tips that can help ease IBS. by RaiulBaztepo http://risg.org/blog/?page_id=711&cpage=1#comment-136 RaiulBaztepo Tue, 31 Mar 2009 12:59:25 +0000 http://risg.org/blog/?page_id=711#comment-136 Hello! Very Interesting post! Thank you for such interesting resource! PS: Sorry for my bad english, I'v just started to learn this language ;) See you! Your, Raiul Baztepo Hello!
Very Interesting post! Thank you for such interesting resource!
PS: Sorry for my bad english, I’v just started to learn this language ;)
See you!
Your, Raiul Baztepo

]]> Comment on Related websites our visitors recommend. by Rick Hahn http://risg.org/blog/?page_id=614&cpage=1#comment-69 Rick Hahn Tue, 17 Feb 2009 18:29:04 +0000 http://risg.org/blog/?page_id=614#comment-69 Kick AS. The Ankylosing Spondylitis Support Forums http://www.kickas.org Kick AS. The Ankylosing Spondylitis Support Forums
http://www.kickas.org

]]> Comment on Related websites our visitors recommend. by Rick Hahn http://risg.org/blog/?page_id=614&cpage=1#comment-68 Rick Hahn Tue, 17 Feb 2009 18:27:54 +0000 http://risg.org/blog/?page_id=614#comment-68 Arthritis Foundation http://www.arthritis.org Arthritis Foundation
http://www.arthritis.org

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