Guest guest Posted March 11, 1999 Report Share Posted March 11, 1999 Dear , I found that at first it took quite a bit of time to adjust psychologically to the constraints that the PA can put on my capabilities and mobility. When I am lucky enough to get a good remission going- about two months long - three times a year at most-- I make the most of it, believe you me. I drive hours to visit friends and relatives. If the weather is warm, I try to go away on another weeks vacation {somewhere in driving distance} Most of all I live life to the fullest. I do need to use wrist splints and a cane when things are painful -- it would not be so annoying if other people would mind their own business and not ask 30 questions, I should think of some queer answers and have them at the ready next time! You didn't say what dose of which medication you are on. Do you feel confident that this dose is sufficient? If not you and your doc should consider going with the injection once a week, in combo with something like Kytril or Zofran for the resultant nausea, Oh, by the way, manym myself included have tried the Metho shot after supper with good results. That way you sleep off much of the exhaustion that hits after the shot starts working. Good Luck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 1999 Report Share Posted April 29, 1999 sorry to hear you are developing PA. as far as getting official with the PA see a rhuematologist. If you would like to meet with other young adults with similar ailments, the Chatanooga chapter of the Arthritis Foundation is hosting the south east regional AJAO(American Juvenile Arthritis Organization) conference this August 6-8. This conference will also have a section just for young adults, i am also planning on attending. mark markusmgru@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 1999 Report Share Posted April 29, 1999 I live in East TN and was luckey to find a derm. who was well qualified to treat my PA. Over my 30 years of fighting this problem, this was the first time that I found that blend of talents. Most doctors have not been very aware of the others. Good luck in finding someone worthwhile. When you do find a competent doctor -- things get a lot better. [ ] Hello >From: NicNash@... > >My name is (I am 28) and I am new to this group. I joined to >hopefully learn more about PA and have support. I have had severe Psoriasis >for more than 15 years and feel certain that I have recently developed PA. >I am one that has lost faith in the medical community and have been reluctant >to go to the doctor regarding my increased fatigue,swelling and joint pain. >I have turned instead to the net to educate myself and believe it or not >discovered PA for the first time. None of my derms ever mentioned the >possiblity. So thus far I have only made a self diagmosis and I realize that >it is necessary to go to the Doc for the " official " diagnosis. I am coming to >terms with the fact that I need to make an appointment. Can my derm diagnose >this or is there a specialist I should see? > >I am anxioous to learn more about what has helped others in this group and >more about the varying symptoms. > >I live in Nashville Tn and if anyone happens to live in Mid Tn and can refer >a doctor Iwould be grateful. > >Thanks for listening. I look forward to getting to know everyone. > > >------------------------------------------------------------------------ >Attention small business owners: > >Did you know that ONElist is a great way for small business owners >to stay in touch with their customers? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 1999 Report Share Posted July 31, 1999 Hi Lee Ann -- I'm in my late thirties and was diagnosed a year and a half ago. I imagine I had it some five or six years before diagnosis, and saw lots of doctors who could not get a grip on the problem -- so you are not alone in this late diagnosis bit! My hands and feet hurt quite a bit, and I have ankylosing spondylitis in my SI joints. You don't say what meds your RD (Rheumatoid Doctor) had you on, but if you are on folic acid I'd imagine s/he has you on methotrexate. I find MTX works better than just about anything I have tried. I used to take it orally @ 25 mg/week, but my doctor recently switched me to the injectible form. You might find the MTX upsets your stomach, and injections help to minimize the upset. Indocin, a drug which is good for pain, can also upset your stomach, and the way out of that trouble is to switch to Celebrex. There are lots of resources you should consider consulting. One is the web page that accompanies this list, at http://www.wpunj.edu/pa/ . While you are there you can visit the " web resources " page. Among the many good webpages is the one for the Arhtitis Foundation of America, at http://www.arthritis.org . At that site you can become a member, which entitles you to their magazine, " Arthritis Today. " The July/ August issue, on stands now, has a VERY good guide to arthritis drugs. And there are chats in where you can meet arthritis people from all over the world and talk about doctors, drugs, families, experiences, etc. You can try the one at Dr. Koop, http://www.drkoop.com which is open 24x7 but does not have a specific arthritis room. They do feature a Psoriatic Arhritis chat on Wednesday nights at 8-9p EDT. About.com, http://www.about.com , has a room open specifically for arthritis 24x7. All sorts of arthritis people come to that room, often starting around 8p EDT just about every night. They host a PA chat on Thursday at 8p, but is only loosely tied to PA. I was not a " chat " person before I found these rooms, and they are still the only places I " chat. " I have always thought chat a waste of time, and think it largely is, but directed, mature chats like the ones on About.com and Drkoop.com are very useful, especially is you are new to arthritis. So, Lee Ann, if you have waded all the way through this, welcome to the PA list! There are lots of good people here, and with it and some of the other resources I mentioned here I hope your detour to arthritis-land will be that much more comfortable. === , NJ Highlands raharris@... _____________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 In a message dated 4/2/2003 11:40:26 AM Pacific Standard Time, janlindner@... writes: > Hi, > I'm new to the group and wanted to introduce myself. My name is Jan > and I'm a 40 year old stay at home mom. I have 1 son he is 8 > years old and he has AS. I haven't had a lot of experience with AS > and I'm glad to find a support group for parents. Hi Jan, I have a 4 yr old son dx with AS and other diagnosis possibilities....his so young jury is still out unofficially....This is the BEST group!!! (if I do say so myself) I'm a stay at home mom too and yes, 40! Please ask any questions you have regarding ....there is a lot of experience here and its been very helpful. Johanna, mom of 3, sometimes 4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 Jan... Welcome to the group. I am also a SAHM to three sons... the youngest, , has AS and is a freshman in high school... He was not dx until age 11. This is a wonderful place for information, encouragement and support. Jump in to the conversation anytime...I look forward to getting to know you and your family better. Blessings, Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 I also have an 8 year old son with Asperger's. We live in Texas. Where are you located? Has your son been officially dx'd. I am still trying to get my son in to be evaluated and diagnosed. Until he gets his " label " , we are more limited on the help we can get for him. Blessings! Diane ( ) Hello Hi, I'm new to the group and wanted to introduce myself. My name is Jan and I'm a 40 year old stay at home mom. I have 1 son he is 8 years old and he has AS. I haven't had a lot of experience with AS and I'm glad to find a support group for parents. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2003 Report Share Posted April 3, 2003 We live in Las Vegas, NV. He has been dx'd. It took all of his kindergarten year and a couple of weeks of 1st grade before they finally got him evaluated. And I had to keep pushing them. Keep after the school you have to force them to give help. I'm very active in the classrooms with him and talk to his teachers and couselors about his progress and problems every week. Share all your concerns and tell them about things that help him. It will make things better. Best Wishes, Jan > I also have an 8 year old son with Asperger's. We live in Texas. Where are > you located? Has your son been officially dx'd. I am still trying to get > my son in to be evaluated and diagnosed. Until he gets his " label " , we are > more limited on the help we can get for him. > > Blessings! > Diane > > ( ) Hello > > > Hi, > I'm new to the group and wanted to introduce myself. My name is Jan > and I'm a 40 year old stay at home mom. I have 1 son he is 8 > years old and he has AS. I haven't had a lot of experience with AS > and I'm glad to find a support group for parents. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 In a message dated 6/12/03 11:34:04 AM Eastern Daylight Time, faeriehouse@... writes: > I though it would be a good idea to at least introduce myself to everyone. > > > , Hi! Welcome to our loopy group! Roxanna ôô What doesn't kill us Makes us really mean. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 In a message dated 6/12/2003 8:34:08 AM Pacific Daylight Time, faeriehouse@... writes: > I was also told that, although he appeared to be gifted, to lower my sights > as my son wouldn't amount to much. He is now 19. He's even brighter than > they though he was. Hi and welcome. This is so crummy that they would say that!!! Ugh! Glad to hear that they were SO wrong. I have a 4 yr old who has had 3 differing diagnoses in the last 6 months! AS, Expressive-Receptive LD, PDD-NOS......We have him in a special ed preschool for another year and I just made it through my first official IEP..... Johanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Hi, My name is . My oldest son was recently 'officially' diagnosed AS. When he was originally diagnosed at age 4, AS wasn't on the list of choices and I was told he had a VERY severe case of ADHD. I was also told that, although he appeared to be gifted, to lower my sights as my son wouldn't amount to much. He is now 19. He's even brighter than they though he was. He has never scored below a 95%ile on any standardized test (99 is his norm) and thought the SAT's were too easy. I have been through more IEP meetings and 504 conferences than most 'professionals' at this point. I also have 2 other children both of whom are ADD (one with an LD tag and one with an ODD tag as well-- we live in the land of alphabet soup!). I though it would be a good idea to at least introduce myself to everyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Hi , Welcome! I'm Liz, and I've got a 15 year old son with AS, and a 20 year old NT daughter who is in college. My son wasn't diagnosed until he was 10 or 11 -- the school system always told me he was " too functional " or " not in the bottom 5 % so we don't have to test him " and like an idiot I believed them. Rather than fight, we put him in a private school for kids with learning disabilities. *Major* mistake! The school was mostly for kids with ADHD, not for kids with AS. They all ganged up on him. Had to take him out and put him in a special ed public school, where he remains to this day. We're very happy with it. Liz faeriehouse@... wrote: > Hi, > > My name is . My oldest son was recently 'officially' diagnosed AS. When he was originally diagnosed at age 4, AS wasn't on the list of choices and I was told he had a VERY severe case of ADHD. I was also told that, although he appeared to be gifted, to lower my sights as my son wouldn't amount to much. He is now 19. He's even brighter than they though he was. He has never scored below a 95%ile on any standardized test (99 is his norm) and thought the SAT's were too easy. I have been through more IEP meetings and 504 conferences than most 'professionals' at this point. I also have 2 other children both of whom are ADD (one with an LD tag and one with an ODD tag as well-- we live in the land of alphabet soup!). > > I though it would be a good idea to at least introduce myself to everyone. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Hi, !!!!!! I am glad you joined in. One of the things that help me along the way is hearing other parents who are " ahead of me " in this journey tell about their experiences and overall hearing how eventually these kids of ours do find their niche in life and can be productive happy individuals! Fania mom to M 10.5yo boy- AS S 8.5yo girl - ADHD N 2yo boy - plain mischievous :-) wife to Alan - don't start me on that one ! lol Re: ( ) Hello Hi, My name is . My oldest son was recently 'officially' diagnosed AS. When he was originally diagnosed at age 4, AS wasn't on the list of choices and I was told he had a VERY severe case of ADHD. I was also told that, although he appeared to be gifted, to lower my sights as my son wouldn't amount to much. He is now 19. He's even brighter than they though he was. He has never scored below a 95%ile on any standardized test (99 is his norm) and thought the SAT's were too easy. I have been through more IEP meetings and 504 conferences than most 'professionals' at this point. I also have 2 other children both of whom are ADD (one with an LD tag and one with an ODD tag as well-- we live in the land of alphabet soup!). I though it would be a good idea to at least introduce myself to everyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Dear Liz, In some ways I think I 'lucked out' with my son. I had some experience with special education prior to my son's birth (mostly volunteering at my church as a teenager and then working in a voc rehab agency for a few years). I also knew a few people personally who worked professionally with special needs children. When my son was 2 I took him to a friend who worked as a Speech Pathologist. My son did not speak at the time (which was my reason for questioning things). He managed a few words (ma-ma) and several sounds that weren't really words (ah ju for apple juice). The strange thing was I knew he understood me and that he was quite bright even though he wasn't talking. She confirmed that it wasn't just mom worrying and gave me some sound advice as to who and what to see when I got home to get him services. He started school at a private special ed. preschool for children with speech and hearing disabilites. He went from non-verbal to reading in under 2 years. He continued to recieve speech therapy even after our move to a different state (that offered nothing but therapy 2 x 30 for kids like my son). At 4, he was tested again and they labeled him with severe ADHD. ALthough it seemed like an answer at the time, eventualy I realized that wasn't 'all' of what was going on with my son. The schools eventually just listed him as OHI (other health Impaired)more to shut me up than anything else but it got him services- they could have called him a duck and I'd have gone along with it as long as it got him help! By middle school he was the only student in both the Gifted and LD class- he also was recieving physicaly and occupational therapy outside of school for dexterity delays (fine and gross motor) and major balance issues (to this day he literaly bounces off the walls walking down the hallway at home). The flip side-- I have the only 19 year old who actually says- and means it too!- thank you for everything I do for him. He's a giant teddy bear of a kid/man- sweet and loving. He's a true genius - and an absent minded professor. He forgets alot but he always does what you ask him to if you remind him- with no complaints. Heck he tutored me in Chemistry when I went back to school last year. He is totally devoted to his younger sister and brother and myself. He graduated from High School last year as a state scholar, scored 1350 on the SAT's and is attending college on full scholarships and the help of voc rehab. He managed to Ace 4 years of Latin, and every advanced math and science course they could throw at him. My son isn't quiet sure what God has in mind for him but we both know its something special. At the rate we are going he's either going to make a fortune inventing a new video game that makes a mint (and donating a fortune to cure something) or he'll come up with a computer system that makes a major difference in peoples lives. They told me not to aim high.. So we aimed for the stars. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 What a great story! He has really done well for himself. That reflects well on him as well as on you! (You really advocated for him) Tell me, what role does voc rehab have for him in college? Liz faeriehouse@... wrote: > Dear Liz, > > In some ways I think I 'lucked out' with my son. <snip> > My son isn't quiet sure what God has in mind for him but we both know its something special. At the rate we are going he's either going to make a fortune inventing a new video game that makes a mint (and donating a fortune to cure something) or he'll come up with a computer system that makes a major difference in peoples lives. > They told me not to aim high.. So we aimed for the stars. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 we live in the land of alphabet soup!). > > I though it would be a good idea to at least introduce myself to everyone. > > Hi! I loved that. The speech teacher asked me again today if I had my son's dx on paper. I told her I had several for each child...tell me what you need...we have it. lol. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2003 Report Share Posted June 14, 2003 Dear Liz, Voc Rehab is willing to pay for 4 full years at a state college or university less an grants th\or scholarships that he may be elligable for.. not jsut tution either but books and expenses and any thing else he may need helps with. He is currently attending the local community college and will be transfering to a larger state college in another year. God never gives you more than you can handle; he just has more confidence in me then I have in myself.********* " Do Little Things With Great Love " Mother Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2003 Report Share Posted October 17, 2003 Fania, When you can catch N, please give him big hugs and kisses from me! I am glad it wasn't meningitis<whew>. I remember running away too, and Nick never went farther than around the block. Last night he refused to leave the room when I TOLD him to. I almost prefer the running. I was so angry with him. He promised me he would do his homework(already modified) and fought me tooth and nail the whole way... you know the drill. Anyway, it's done, and he even got to bed on time. Argh. I hope it gets better. I'll keep you in my prayers for when he goes back to school. Love Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2003 Report Share Posted October 17, 2003 I'm glad the baby is alright. That is a scary thing to go thru. MISSY SAHM to some special kids!!! Excuse Me While I Go Raise Tomorrow's Future. ( ) hello > HI everyone, > still rarely getting to the computer. at least not as much as I am used to.. > . > spent this week three sleepless nights (and days) , two of which in the ER > with baby - he is FINE now, but we had a scare with meningitis. > now we just have to keep an eye on his BP. > He is already running around at a pace I cannot catch...... > > M is having a really hard time. very nervous. has run away twice when angry, > but did not go to far and came back adn told us where he was. (I see these > things come in sync in our list, I noticed another post about running out... > .) > Monday is back to school, and I dread it. > F > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2003 Report Share Posted October 17, 2003 > HI everyone, > still rarely getting to the computer. at least not as much as I am used to.. > . > spent this week three sleepless nights (and days) , two of which in the ER > with baby - he is FINE now, but we had a scare with meningitis. > now we just have to keep an eye on his BP. > He is already running around at a pace I cannot catch...... > > M is having a really hard time. very nervous. has run away twice when angry, > but did not go to far and came back adn told us where he was. (I see these > things come in sync in our list, I noticed another post about running out... > .) > Monday is back to school, and I dread it. > F Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2003 Report Share Posted October 17, 2003 is playing me again!! I have about had it!! Ive tried to send this now 4 times!! I replyed.... Sorry to hear about the baby!! Glad he is doing better! Will keep him in my prayers! Steph > > HI everyone, > > still rarely getting to the computer. at least not as much as I am > used to.. > > . > > spent this week three sleepless nights (and days) , two of which in > the ER > > with baby - he is FINE now, but we had a scare with meningitis. > > now we just have to keep an eye on his BP. > > He is already running around at a pace I cannot catch...... > > > > M is having a really hard time. very nervous. has run away twice > when angry, > > but did not go to far and came back adn told us where he was. (I > see these > > things come in sync in our list, I noticed another post about > running out... > > .) > > Monday is back to school, and I dread it. > > F Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2003 Report Share Posted October 19, 2003 Oh Fania! I hope the baby is better by now! Roxanna > . > spent this week three sleepless nights (and days) , two of which in the ER > with baby - he is FINE now, but we had a scare with meningitis. > now we just have to keep an eye on his BP. > He is already running around at a pace I cannot catch...... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2003 Report Share Posted October 19, 2003 <<<<<<<<! I hope the baby is better by now! Roxanna>> yes, thank you ! F Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Please confirm! +++ Attachment: No Virus found +++ MessageLabs AntiVirus - www.messagelabs.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 /message/61132 just follow through the replys. i would get a hair test. > Hi, all I am new here. My son was diagnosed with PDD:NOS last april > 2003. I would appreciate all emails or posts considering eyes all of > a sudden crossing a few times a day. Hubby says he is just tired. Is > this possible? My birth to three class teacher suggested lazy eye > pops up around this age (3)? Any suggestions? Anyone can check out my > profile if they wish I would love to hear some support as I am a busy > mom of three with a hombased business to run so I don't really have > time to go to a support group 30 minutes away. Thanks in advance ) Quote Link to comment Share on other sites More sharing options...
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