Guest guest Posted January 25, 2001 Report Share Posted January 25, 2001 Claim religious...anything you believe in strongly and practice is religion...barring that, say you belong to the Church of Christian Scientists, as they do not believe in vaccinating... Sharon, Quakertown PA Hello, new here > Hi, my name is Leyla. We are currently in SAlt Lake City Utah but > will be moving to South Carolina in the near future. Here in Utah we > have lovely philosophical exemptions, but in South Carolina, they > only have religious and medical exemptions. > > I haven't gotten any response from anybody from the health dept in SC > (surprise, surprise). Is anyone here from SC? If so, how on earth > do you get out of vaccinating? > > Thanks, > Leyla mom to Antha 2, and Drew 5 mos. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2001 Report Share Posted January 28, 2001 can you " say that " even if you don't belong to that particular church? ~~ jacqui monroe, ny DeVan wrote: > > Claim religious...anything you believe in strongly and practice is > religion...barring that, say you belong to the Church of Christian > Scientists, as they do not believe in vaccinating... > Sharon, Quakertown PA > Hello, new here > > > Hi, my name is Leyla. We are currently in SAlt Lake City Utah but > > will be moving to South Carolina in the near future. Here in Utah we > > have lovely philosophical exemptions, but in South Carolina, they > > only have religious and medical exemptions. > > > > I haven't gotten any response from anybody from the health dept in SC > > (surprise, surprise). Is anyone here from SC? If so, how on earth > > do you get out of vaccinating? > > > > Thanks, > > Leyla mom to Antha 2, and Drew 5 mos. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2001 Report Share Posted January 29, 2001 Upon listening to some ideas on this subject from others on this list, I think it is better overall to not claim any " certain " religion, but to maybe just make some arguments of your own using the Bible/Torah/whatever as reference material. If you do need to claim a specific religion for some reason, just research it so that you can give the correct answers when/if they come...no one can actually prove that you belong to one church or another, as religion is something that can be changed as frequently as our beliefs change... Sharon, Quakertown PA Hello, new here > > > > > Hi, my name is Leyla. We are currently in SAlt Lake City Utah but > > > will be moving to South Carolina in the near future. Here in Utah we > > > have lovely philosophical exemptions, but in South Carolina, they > > > only have religious and medical exemptions. > > > > > > I haven't gotten any response from anybody from the health dept in SC > > > (surprise, surprise). Is anyone here from SC? If so, how on earth > > > do you get out of vaccinating? > > > > > > Thanks, > > > Leyla mom to Antha 2, and Drew 5 mos. > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2003 Report Share Posted May 31, 2003 Hi , I to am only on Oxy and I still hurt. I was doing MTX and was waiting on my Enbrel and taking an INH Therapy do to a positive test to TB exposure(Great-Sarcasm) when my Rheumatologist called after a blood test and told me to stop everything and go see my regular doctor. He said my liver enzymes were off the chart. So I went and saw my reg doc and she said I have a choice. Deal with the pain and suffer those effects and take the INH. Or stop the INH and take a chance of dying by catching TB but continue the Enbrel. I chose to finish my INH therapy, which is for another 6 month. I have been considering disability myself but am scared; I am only 35 and a father of 4. What is the process for disability? How much is the income per month? I just got laid off from my job as a Network Admin, they say it was just cut backs but I know better. I can't prove it but t was my Managers fear of the arthritis. It is hard for me to continue that line of work because I use my hands all day and the stress is immense. I just wanted to share with you a little bit about me. Thanks for listening Bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2003 Report Share Posted May 31, 2003 In a message dated 5/31/2003 2:01:17 PM Eastern Daylight Time, rmowery@... writes: > What is the process for disability? How much is the income > per month? lolol that was FYI...not sure what FIY is ;-)! (Va.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2003 Report Share Posted May 31, 2003 --Hi , Boy does your story sound familiar! I have PA, P, AS, Fibro and brain farts too. Glad you joined the group. I hate those mornings where it is hard just to get up and make it into the bathroom. Good Luck with your fertility efforts. I applaud you for going the extra mile..that will be one loved baby. On disability: I was 34 when I finally crashed from exhaustion and had to go on SSDI. You may already know this but here are some things that helped me get it! Find one of your Docs who is sympathetic-In my case it was my GP because the Rheumie was like yours. Or if you have to find a new Dermie or whoever who will help you. Mine even offered to come to court with me but it wasn't necessary as just the offer made a difference to the State. Hire a lawyer who specialises in SSDI. They are listed in the phone book and take a percentage of back pay: They don " t ask for money up front. If your X-rays look bad take them, Get input from former employers...you know you are a good worker and want to work simply and absolutely unable to right now. Good Luck with it:Appeal if neccesary! Best Wishes, Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2003 Report Share Posted May 31, 2003 In a message dated 5/31/2003 6:55:49 AM Eastern Daylight Time, spanishdisco@... writes: > I had a difficult time with my husband because he couldn't understand > what I was going through (and still can't). I have these *brainfarts* > where I can't remember things. I know what I want to say but I > can't get it out. Hi Michele, Welcome. You sound like you are describing me. My husband is the same way. He just doesn't understand. You will find that we all do here. What state do you live in since I am thinking about disability as well. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 , I am 26 and experiencing alot of the same stuff too. Got PA and fibro. No P...yet. My husband's having a hard time understanding too. I get the brainfarts pretty bad too. My husband used to think I was going crazy. He would say something to me and a couple of minutes later I would completely forget. I also have a habit of repeating myself. I am sure it gets annoying after a while. I can be in the middle of a sentence and forget what I was saying or walk into a room and forget what I was supposed to get. I am considering disability too since I am getting worse working. Good luck with getting a rheumy to treat your PA aggressively. That's very important. take care, [ ] Hello, new here Hi, My name is Michele and I'm 34. I was diagnosed with PsA, SA and Fibromyalgia two years ago. My first outbreak of Psoriasis was around 22, stayed for about 3 months and then came back with a vengeance in 2000 (very stressful time arranging my wedding). I lost two 3 " patches of hair in my temple areas and that lasted for several months. After that I started having difficulty getting out of bed (sore/stiffness). My symptoms came on quickly. Within 3-4 months I was having days where I couldn't get out of bed and when I did I couldn't do much aside from walking to the bathroom. I had a difficult time with my husband because he couldn't understand what I was going through (and still can't). I have these *brainfarts* where I can't remember things. I know what I want to say but I can't get it out. It makes me feel horrible because simple words are impossible for me to get out and I can't properly express myself when I can't remember how to speak! It also makes for boring conversation when there's that silent period while I try to remember a word. I'm currently only on Oxycontin (which is why I'm not sleeping now)(40mg 3x a day) because I'm also taking fertility medication. I had to make a decision, pain relief and no child or pain and hopefully a child. I chose the latter. I'm having a problem with my Rheumatologist at the moment. He's not very proactive with my arthritis. I see him once a month and that's to get a PX for the Oxy. I know there's not much he can do while I'm going for fertility treatments, but I feel like I'm just one of his herd of patients. I'm waiting for a hearing date for permanent disability but have a feeling that, at 34, the state will not give it to me. I was actually told by the state's doctor that I'm too young for the state to want to have to pay me. He said if I were in my 50's it would be a different story. Not very encouraging when you hear this from a doctor that works for the state. Thank you for reading my story and I look forward to being a member of this group. Best, Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2005 Report Share Posted August 1, 2005 Hi, Its nice to meet you. I am so sorry you went through that with your son. I am glad you stopped getting the shots. very glad. I am a vaccine injured adult who also stopped getting shots for my children when I was damaged. its so sad that we think we are doing the best and right things for ourselves and kids and things like thishappen. It is nice to have you with us and hope to chat with you.love Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2005 Report Share Posted August 1, 2005 Welcome Kristy Ann..I too hate to hear this story of what happened to yoour little one. I have heard this same story many times and it breaks my heart every time. I know you will find a wealth of info here. Feel free to ask question as there is almost always someone here to answer. Take care Sherry > Hello, I am new here, my name is Kristy-Ann, and I have a son who is > now 18 months old. We orignally began immunizing Jakob, but were > hesitant, as we had only heard a little about the dangers of > vaccinating our son. We reserached more after we eneded up in the > emergency room every sinlge immunization with a baby who would'nt stop > screaming, a high pitch screaming for hours on end, his leg was > swollen, his eyes glossy and unconsilable. We left the emergency room > being told it was nothing but a viral infection, and that > immunizations could not have caused him to scream like that. We went > home and our son continued to cry for most of the night, and cranky > for the next couple of day's. We have sense stopped immunizing our child. > > Hope to get to know everybody. > > Kristy-Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 > Also I want to ask about other reactions to enzymes, he seemed to get a red > ear quite soon after pep, can the the protease be a problem? He has really > loose stools the past few days and am trying to get to the cause of it, as I'm > also in the process of trying to introduce new foods to my son Only add one thing at a time. Don't add new foods if you are still trying to work out the addition of the enzymes. >>Today, he had 3 runny nappies, sorry for the detail but, greeny > mustardy colour, kind of mucusy with strong smell, he normally goes once > every 2 days which is why I was concerned. For my kids, green bm meant something was eaten that was not tolerated. Could have been a supplement or a food. Mucus in the bm meant yeast http://www.danasview.net/yeast.htm Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2006 Report Share Posted November 14, 2006 Welcome ! Sounds like you have a full plate. Your in the right place. suedenipink05 <denipink05@...> wrote: I am stopping in to see if this board will be a good fit for me. My name is , 49 and i live in Oshawa, Ontario, Canada. I am looking for caring support and daily interaction. I want to meetnew friends. I have Bipolar disordor, Osteoarthritis and Diabetes type 2. I look forward to your posts. For a REALLY HOT time check out http://www.peternoone.com and http://www.mikesmith1964.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2006 Report Share Posted November 15, 2006 i think this will be a great group for you. there are a lot of caring people here to offer support. i look forward to hearing from you again. evelyndenipink05 <denipink05@...> wrote: I am stopping in to see if this board will be a good fit for me. My name is , 49 and i live in Oshawa, Ontario, Canada. I am looking for caring support and daily interaction. I want to meetnew friends. I have Bipolar disordor, Osteoarthritis and Diabetes type 2. I look forward to your posts. Sponsored LinkMortgage rates near 39yr lows. $310,000 Mortgage for $999/mo - Calculate new house payment Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2007 Report Share Posted August 26, 2007 ah , with all that going on, it would be pretty hard not at least to have a few episodes of depression. I also am amazed, in awe at all you gave away when you really didn't have the energy or strength to do it. I sure wish there were a way that somehow there would be rewards here and now for you. It seems like way too many great people have major health issues! Well, now you have someone else to focus on -- yourself! I devoutly hope you will give as much to your own care as you have given to your family. Hopefully you will even be able to get the doctors firmly on board this time! Do keep us up-to-date with what happens, please! We're all pulling for you. hugs, Jean Hello, new here I debated hard on leaving the group, before I even got started. The night I joined the group I was down and depressed, maybe even having a pity party for myself. This could be why I did not post, I did not want to bring anybody down with me. I suffered with Panic/Anxiety Disorder for many years, but not diagnosed till later in lie.In 1995 I had a heart attack (miocardiac infarction) at the age of 45. I had blocked arteries at this time, however the doctor did not tell me this, or else he did not care. Due to insurance reasons this doctor could not see me anymore. I was assigned a new doctor, then later had to have a stent put in my heart artery. This all led to 2 other stent surgeries and 1 subclavial bypass, all within an 8 month time.My sister and mother were both diagnosed with cancer last year. My sister passed in Dec. 06. She fought it all the way, however my mother was given 3 months to live before my sister passed. To make a long story short, I had to be the caregiver for my mother. She had a heart attack, blood clot and picked up a staph infection along the way. Mom was laid up in the hospital for a month. Flat on her back, couldn't walk, talk or do anything for herself. My sister and brother left mom for dead, however I never gave up on mom. I cared for her over a month, then had a nervous breakdown and almost had another breakdown. This is when I had to stop caring for my mother. I gave her the best care possible, considering my health was getting worse. Mom is still here shes back up on her feet and doing great for someone that was given 3 months to live.I pushed myself aside and to this day I regret letting myself go. I've got more blocked arteries that could have been fixed last year, but now I feel that it's to late for me. I will find out next month if the doctor can redo the stents. I have Coronary Artery Disease that my cause me to be unable to spell things correctly at times. I do suffer pain with the blocked arteries. I have COPD, IBS, Post Traumatic Stress Syndrome and osteoporosis. I have a birthday coming up on Nov. 9th, I wonder if I will be around to see 58. Sorry, pity party time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2007 Report Share Posted August 26, 2007 Thanks for your kind words. Caring for others has always been my passion. I always loved working at the nursing homes and doing home health. I plan on taking care of me from now on . Mom has a paid caregiver that stays with her from 7 am till 7 pm. She has a medical alert alarm to use, if she needs any medical assistance after the caregiver leaves. It's very true that many great people have major health issues. My aunt would be first on my list of giving awards. She worked till retirement, then voluteered at the local nursing home to help them for 15 years. She was stricken with osteoarthritis in her back, however she still goes to the nursing home. I will keep everyone up-to-date of the outcome of dr's visit then tests. hugs gettingthere35 <gettingthere35@...> wrote: ah , with all that going on, it would be pretty hard not at least to have a few episodes of depression. I also am amazed, in awe at all you gave away when you really didn't have the energy or strength to do it. I sure wish there were a way that somehow there would be rewards here and now for you. It seems like way too many great people have major health issues! Well, now you have someone else to focus on -- yourself! I devoutly hope you will give as much to your own care as you have given to your family. Hopefully you will even be able to get the doctors firmly on board this time! Do keep us up-to-date with what happens, please! We're all pulling for you. hugs, Hello, new here I debated hard on leaving the group, before I even got started. The night I joined the group I was down and depressed, maybe even having a pity party for myself. This could be why I did not post, I did not want to bring anybody down with me. I suffered with Panic/Anxiety Disorder for many years, but not diagnosed till later in lie.In 1995 I had a heart attack (miocardiac infarction) at the age of 45. I had blocked arteries at this time, however the doctor did not tell me this, or else he did not care. Due to insurance reasons this doctor could not see me anymore. I was assigned a new doctor, then later had to have a stent put in my heart artery. This all led to 2 other stent surgeries and 1 subclavial bypass, all within an 8 month time.My sister and mother were both diagnosed with cancer last year. My sister passed in Dec. 06. She fought it all the way, however my mother was given 3 months to live before my sister passed. To make a long story short, I had to be the caregiver for my mother. She had a heart attack, blood clot and picked up a staph infection along the way. Mom was laid up in the hospital for a month. Flat on her back, couldn't walk, talk or do anything for herself. My sister and brother left mom for dead, however I never gave up on mom. I cared for her over a month, then had a nervous breakdown and almost had another breakdown. This is when I had to stop caring for my mother. I gave her the best care possible, considering my health was getting worse. Mom is still here shes back up on her feet and doing great for someone that was given 3 months to live.I pushed myself aside and to this day I regret letting myself go. I've got more blocked arteries that could have been fixed last year, but now I feel that it's to late for me. I will find out next month if the doctor can redo the stents. I have Coronary Artery Disease that my cause me to be unable to spell things correctly at times. I do suffer pain with the blocked arteries. I have COPD, IBS, Post Traumatic Stress Syndrome and osteoporosis. I have a birthday coming up on Nov. 9th, I wonder if I will be around to see 58. Sorry, pity party time. Fussy? Opinionated? Impossible to please? Perfect. Join 's user panel and lay it on us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 AWWWWWW LINDA;; SORRY YOU HAVE TO GO THROUGH ALL THIS;BUT WE ARE HERE FOR YOU TO VENT IF YOU WANT TO ; LOTS OF NICE & CARING PEOPLE IN THIS GROUP;; TAKE CARE OF YOU;; SOUNDS LIKE RIGHT NOW YOU NEED TO BE PUT FIRST;;WELCOME TO THE GROUP HEALING ((HUGS)) DORT FROM MICHlinda milligan <linda_tztn@...> wrote: I debated hard on leaving the group, before I even got started. The night I joined the group I was down and depressed, maybe even having a pity party for myself. This could be why I did not post, I did not want to bring anybody down with me. I suffered with Panic/Anxiety Disorder for many years, but not diagnosed till later in lie.In 1995 I had a heart attack (miocardiac infarction) at the age of 45. I had blocked arteries at this time, however the doctor did not tell me this, or else he did not care. Due to insurance reasons this doctor could not see me anymore. I was assigned a new doctor, then later had to have a stent put in my heart artery. This all led to 2 other stent surgeries and 1 subclavial bypass, all within an 8 month time.My sister and mother were both diagnosed with cancer last year. My sister passed in Dec. 06. She fought it all the way, however my mother was given 3 months to live before my sister passed. To make a long story short, I had to be the caregiver for my mother. She had a heart attack, blood clot and picked up a staph infection along the way. Mom was laid up in the hospital for a month. Flat on her back, couldn't walk, talk or do anything for herself. My sister and brother left mom for dead, however I never gave up on mom. I cared for her over a month, then had a nervous breakdown and almost had another breakdown. This is when I had to stop caring for my mother. I gave her the best care possible, considering my health was getting worse. Mom is still here shes back up on her feet and doing great for someone that was given 3 months to live.I pushed myself aside and to this day I regret letting myself go. I've got more blocked arteries that could have been fixed last year, but now I feel that it's to late for me. I will find out next month if the doctor can redo the stents. I have Coronary Artery Disease that my cause me to be unable to spell things correctly at times. I do suffer pain with the blocked arteries. I have COPD, IBS, Post Traumatic Stress Syndrome and osteoporosis. I have a birthday coming up on Nov. 9th, I wonder if I will be around to see 58. Sorry, pity party time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2008 Report Share Posted December 19, 2008 Dear Sherry, Ask your podiatrist to send you for neurologic testing for CMT. There's a remote, but possible, chance your foot and back problems are related. CMT causes bone deformity, among other things.  (Charcot-Marie-Tooth disease)  Lj From: sherry62490 <sherry62490@...> Subject: Hello, new here Scoliosis Treatment Date: Wednesday, December 17, 2008, 7:30 PM Hi, my name is Sherry. I am 42. I live in PA with my fiance of 9 years, and my 22 yr old son. We have a pug, and 3 cats. I was just diagnosed with scoliosis 4 months ago. I've been dealing with alot of pain, and I have a hard time going up and down the steps. And unfortunately, my computer is upstairs. Well since the dr looked at my old mri's from 4 years ago, he ordered new ones to compare them. So, along with the degenerative disc disease, osteo-arthritis, and scoliosis. I have a couple small herniated discs, galstones, and a small sist on my kidney. The dr started me out on 100 mg of neurontin 3 times a day, now I am up to 800 mg 3 times a day for the last few months. There is no surgery at this time, thank god. But after the new year I will be getting surgery on my feet, cause the bones are dislocated, the foot dr thinks the cause could be from my back. Oh well, when it rains, it pours. But at least I know after 4 years of suffering, I know what is wrong now. So, anyhow, how is every one here? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 Hi, Kymberli and welcome to the list. I hope you find the answers you need. Your story does sound familiar. Many of the kids begin after an illness or injury. It could be reactive arthritis, but if it is hanging on this long it could be JRA. Just a few thoughts on what you have written. Remember there is no blood test for JRA/RA. Many kids are rf negative, yet still have the disease. The diagnosis is made based on the symptoms. The blood work helps to see how the disease is affecting the body, how meds are affecting the organs, or an x-ray is done to see if any joint damage is happening. These are just some general examples. When you say your husband has arthritis on occasion do you mean he has pain and stiffness from OA or he seems to have RA symptoms? I ask because my husband has recently been diagnosed with RA and he seems to be flaring quite a bit. They do not know if there is a genetic component or not, but I kind of think so. It is good that you are getting in to a ped rheumy rather quickly. Some kids go for months because the drs don't think of arthritis. I know my son was one. If she is diagnosed, many rheumy's currently take an aggressive stand against the arthritis and use meds quickly, which helps prevent joint damage. One thing I learned about strep when my oldest daughter had it repeatedly as a young child is that you do not always get a sore throat from it. Some people may have it, but just get a rash they ignore or a mild cold and don't realize they are actually sick with strep. Our ped told us that even the dog can carry the strep virus and if we had one at the time, she wanted the dog tested. Sure her symptoms can stop when before she goes in. The flare could subside. But that does not mean that she does not have anything. It is best to keep the journal and note when she feels the stiffness and pain and what if anything makes her feel better. The dr will examine her and feel the joints all over not just what she is complaining about at the time. I was always amazed that the rheumy could feel swelling in places that did not complain of. The experienced touch is key in my opinion. One more thing, please make sure that if she is diagnosed, you get her in for an eye exam with an eye dr and tell him/her of the diagnosis. She will need to be checked for uveitis which is inflammation of the eye. Hope this helps some. I am sure others will have some ideas as well. Ask any questions you have and let us know how she is doing, Michele ( 21, spondy) ________________________________ From: [mailto: ] On Behalf Of fwlady65401 Sent: Wednesday, March 04, 2009 2:37 AM Subject: Hello, new here Hello, I am Kymberli, and I decided today that I really need to get on a group for what my daughter is going through, rather than blindly doing research online. I have done research, and have gotten very good info, but talking to people personally is what I and she really need now. We don't have a diagnosis yet, about what exactly is going on, but I have some idea. The dr just referred us to a ped rheumatologist today. I will find out soon when our appt is. With our insurance, I am unsure how I will cover it all, if they order a bunch of tests, but we really need to get to the bottom of this. LMK if any of this sounds familiar, but so far this is our journey. My 11.5yo daughter had severe hip pain, but we couldn't figure out how she got that way. They did an xray and over the weekend, we waited. By Monday, she had several more joints that caused her pain, and some were warm to the touch, but they looked pretty normal. So, I took her back in, they said the xray was normal, and did an in clinic test. The dr came in and said that she tested positive for strep. Huh?? None of our family had had strep for years, and the fevers that everyone had 6 weeks before were only 12 hours long. No one needed ABx. He said strep arthritis, and I rejoiced that it was curable and not JuvRA. So, he said they would go ahead and treat it, and to let them know if the pain persists after 7 days. She got better by day 3, completely normal, but by day 9, she was in even worse pain. By then, it was her hip, an ankle, one knee, one elbow she tried to not bend, her shoulder, and her jaw. And, she was limping again. They did the blood test, said it was negative for RA, the strep titers were really high, and to give it 2 weeks. Another week goes by, it is Friday, and she says she can't make it through the weekend. Her back was really killing her. She had been very tired, and her muscles were hurting, probably from compensation. The other dr does a full range of motion on her, checks her spine, and luckily she isn't that stiff, and does the strep test again. It is still positive, and so she goes on a stronger ABx. I knew the Amoxicillan wouldn't work on her, because she had a lot of that as a baby. But, the pain never got better or went away. Her back is the worst now, if she is sitting for 30 min, she has to lay down, move around, and take the Ibuprofen. By the end of the day, she needs a warm bath, but that was after I told her she should do this. One time I asked her what her pain level was, and she said 6-7. I found this impressive, because she never really lets on. She just limps terribly, or skips to avoid bending. So, this has been going on for 6+ weeks now. I took her back in for another strep test, but the dr didn't think it was necassary. I asked him if this was reactive arthritis, as a neighbor gave me a really good article. He said perhaps, but it could also be the beginning of JRA. The fact that she was NOT sick at all right when this started, makes me think it isn't reactive. That she is probably just a strep carrier. No one had gotten strep from her even all this time. And, we have 7 children. My father got the flu one time and had this happen, but hasn't had any other issues. However, my husband has a high rheumatoid level, and has arthritis on occasion. The doctor has now referred us, which is a relief, sort of. I don't want to go back to the Children's hospital, because they know me too well. Our baby has been in and out of the hospital since he was 6.5 mos old, and many medical issues. I think that even though he hasn't started to get better yet (like they promised me 3 mos ago), that he is stable for now, and we may have our last appt this Thursday. I am sure they have " hysterical mom " on his file, and I don't relish taking another child over there. I just don't have the heart to ask the dr to refer us to the farther hospital in the other direction, because even though the hospital has been wrong with the baby MANY times, they have been patient and good to us. So, back we go. Maybe all this will disappear by the time we get in. Any hope of that? Of what I can deduce, she may have the poly-type. The dr also told us to give her Aleve now, because she just isn't comfortable, the poor dear. And, part of her I know mourns for her trampoline and doing what the kids are doing, especially on the nice days. I let her do what she feels like, but she can't even jump around if she wanted to. She is going through hormonal changes right now, so I do wonder if that is all this is all about. She is too young (I was almost 14yo)and not developed enough, to start her monthly, but her body is hormonal right now. So, if anyone has any suggestions or stories to point us to, that would be really greatful. My daughter asked if she should start a journal like I use with our baby, and I told her most definitely!! I think it would give the dr great information. Thanks so much, Kymberli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 Thank you so much for your warm welcome. I did get into some more information and I really suspect she may have spondylitis, if it isn't reactive and doesn't go away like it should. I had seen this and reactive on Mystery Diagnosis. But, since it wasn't her back first, I really didn't think about looking at any other but RA. My husband has some OA, I think, although never diagnosed, and his rheumatoid levels are pretty high, so it could be RA. He gets issues when the weather is crazy. I looked into the spondy, because her back is her main issue right now, and it said that children start with hip pain, and then it moves to the knees and other joints, and then the spine, and that is EXACTLY what happened with her. We thought she had popped her hip out of joint to start with. And, it also said it is associated with Crohn's disease, which her great uncle has a pretty bad case of, however, he doesn't have arthritis. So, that got my attention, I figured that whatever she has may be a " relative " of Crohn's. And, it also made me think of her mystery stomach aches. Then, it mentioned and I remembered the uveitis. Last night, I eliminated that as the culprit since her eyes are fine. But, then today, after we were talking about her journal, and I never mentioned the exact symptoms, but that she may have an arthritis that may go away after she is done changing. And, she asked me outright if there was a type that came with eye pain. I asked her if she had that, and she said that she has had it for a couple of weeks, and had told me about it. I guess because I didn't see it as relevant or affecting her, I didn't hear it. But, it was in her journal. I told her about how the spondy was diagnosed by uveitis on the show. I asked her how her eyes hurt, and she said in the back of her eyeballs on both sides. It feels better when she closes her eyes. So, as I had read here to go to an opthamologist, and that was how this guy was diagnosed with the spondylitis on the show, I decided to go ahead and schedule an appt with the opthamologist on Monday. I would give it a wait and see approach, except I don't want to cause her eyes harm if this is what it is, and it will only get worse. And, of what I have gathered, the quicker the arthritis is treated, the better the prognosis. And, I also figured that we may get lucky. If the dr finds uveitis in her eyes, then she could pretty much confirm that she that it is spondylitis, and we can know what is really going on. I am not going to count on that, but just to check her eyes to be on the safe side, we may get a bonus while there. It could take months to get into the rheumatologist around here. She said the Aleve does help though, especially when combined with the warm bath. There is lots of great info in the archives. You all sound like a nice bunch. Kymberli > > Hi, Kymberli and welcome to the list. I hope you find the answers you > need. > > Your story does sound familiar. Many of the kids begin after an illness > or injury. It could be reactive arthritis, but if it is hanging on this > long it could be JRA. Just a few thoughts on what you have written. > Remember there is no blood test for JRA/RA. Many kids are rf negative, > yet still have the disease. The diagnosis is made based on the symptoms. > The blood work helps to see how the disease is affecting the body, how > meds are affecting the organs, or an x-ray is done to see if any joint > damage is happening. These are just some general examples. When you say > your husband has arthritis on occasion do you mean he has pain and > stiffness from OA or he seems to have RA symptoms? I ask because my > husband has recently been diagnosed with RA and he seems to be flaring > quite a bit. They do not know if there is a genetic component or not, > but I kind of think so. > > It is good that you are getting in to a ped rheumy rather quickly. Some > kids go for months because the drs don't think of arthritis. I know my > son was one. If she is diagnosed, many rheumy's currently take an > aggressive stand against the arthritis and use meds quickly, which helps > prevent joint damage. > > One thing I learned about strep when my oldest daughter had it > repeatedly as a young child is that you do not always get a sore throat > from it. Some people may have it, but just get a rash they ignore or a > mild cold and don't realize they are actually sick with strep. Our ped > told us that even the dog can carry the strep virus and if we had one at > the time, she wanted the dog tested. > > Sure her symptoms can stop when before she goes in. The flare could > subside. But that does not mean that she does not have anything. It is > best to keep the journal and note when she feels the stiffness and pain > and what if anything makes her feel better. The dr will examine her and > feel the joints all over not just what she is complaining about at the > time. I was always amazed that the rheumy could feel swelling in places > that did not complain of. The experienced touch is key in my > opinion. > > One more thing, please make sure that if she is diagnosed, you get her > in for an eye exam with an eye dr and tell him/her of the diagnosis. She > will need to be checked for uveitis which is inflammation of the eye. > > Hope this helps some. I am sure others will have some ideas as well. Ask > any questions you have and let us know how she is doing, Michele ( > 21, spondy) > > > > > > > > > > ________________________________ > > From: [mailto: ] On > Behalf Of fwlady65401 > Sent: Wednesday, March 04, 2009 2:37 AM > > Subject: Hello, new here > > > > Hello, I am Kymberli, and I decided today that I really need to get on a > group for what my daughter is going through, rather than blindly doing > research online. I have done research, and have gotten very good info, > but talking to people personally is what I and she really need now. > > We don't have a diagnosis yet, about what exactly is going on, but I > have some idea. The dr just referred us to a ped rheumatologist today. I > will find out soon when our appt is. With our insurance, I am unsure how > I will cover it all, if they order a bunch of tests, but we really need > to get to the bottom of this. > > LMK if any of this sounds familiar, but so far this is our journey. My > 11.5yo daughter had severe hip pain, but we couldn't figure out how she > got that way. They did an xray and over the weekend, we waited. By > Monday, she had several more joints that caused her pain, and some were > warm to the touch, but they looked pretty normal. So, I took her back > in, they said the xray was normal, and did an in clinic test. The dr > came in and said that she tested positive for strep. Huh?? None of our > family had had strep for years, and the fevers that everyone had 6 weeks > before were only 12 hours long. No one needed ABx. He said strep > arthritis, and I rejoiced that it was curable and not JuvRA. > > So, he said they would go ahead and treat it, and to let them know if > the pain persists after 7 days. She got better by day 3, completely > normal, but by day 9, she was in even worse pain. By then, it was her > hip, an ankle, one knee, one elbow she tried to not bend, her shoulder, > and her jaw. And, she was limping again. They did the blood test, said > it was negative for RA, the strep titers were really high, and to give > it 2 weeks. > > Another week goes by, it is Friday, and she says she can't make it > through the weekend. Her back was really killing her. She had been very > tired, and her muscles were hurting, probably from compensation. The > other dr does a full range of motion on her, checks her spine, and > luckily she isn't that stiff, and does the strep test again. It is still > positive, and so she goes on a stronger ABx. I knew the Amoxicillan > wouldn't work on her, because she had a lot of that as a baby. But, the > pain never got better or went away. Her back is the worst now, if she is > sitting for 30 min, she has to lay down, move around, and take the > Ibuprofen. By the end of the day, she needs a warm bath, but that was > after I told her she should do this. One time I asked her what her pain > level was, and she said 6-7. I found this impressive, because she never > really lets on. She just limps terribly, or skips to avoid bending. > > So, this has been going on for 6+ weeks now. I took her back in for > another strep test, but the dr didn't think it was necassary. I asked > him if this was reactive arthritis, as a neighbor gave me a really good > article. He said perhaps, but it could also be the beginning of JRA. The > fact that she was NOT sick at all right when this started, makes me > think it isn't reactive. That she is probably just a strep carrier. No > one had gotten strep from her even all this time. And, we have 7 > children. My father got the flu one time and had this happen, but hasn't > had any other issues. However, my husband has a high rheumatoid level, > and has arthritis on occasion. > > The doctor has now referred us, which is a relief, sort of. I don't want > to go back to the Children's hospital, because they know me too well. > Our baby has been in and out of the hospital since he was 6.5 mos old, > and many medical issues. I think that even though he hasn't started to > get better yet (like they promised me 3 mos ago), that he is stable for > now, and we may have our last appt this Thursday. I am sure they have > " hysterical mom " on his file, and I don't relish taking another child > over there. I just don't have the heart to ask the dr to refer us to the > farther hospital in the other direction, because even though the > hospital has been wrong with the baby MANY times, they have been patient > and good to us. > > So, back we go. Maybe all this will disappear by the time we get in. Any > hope of that? Of what I can deduce, she may have the poly-type. The dr > also told us to give her Aleve now, because she just isn't comfortable, > the poor dear. And, part of her I know mourns for her trampoline and > doing what the kids are doing, especially on the nice days. I let her do > what she feels like, but she can't even jump around if she wanted to. > She is going through hormonal changes right now, so I do wonder if that > is all this is all about. She is too young (I was almost 14yo)and not > developed enough, to start her monthly, but her body is hormonal right > now. > > So, if anyone has any suggestions or stories to point us to, that would > be really greatful. My daughter asked if she should start a journal like > I use with our baby, and I told her most definitely!! I think it would > give the dr great information. Thanks so much, Kymberli > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 It's still complex because Uveitis can and does occur often with JRA esp. pauciarticular JIA. JAS is a lot more unusual to have and esp. with a female.. not that it can't happen but it's a lot less likely. If your hubby has OA, he wouldnt have high inflamatory rates in his blood... that's a sign of other rheumatic issues like RA. The weather thing can happen with basicaly all types of arthritis. The crohns in the family is a indicator if having the possibility of others in the family getting a autoimuune disease and it is also in the rheumatic spectrum .. also a lot of us develop it along with our primary arthritis diagnosis. It's just difficult and takes time. Ussualy uveitis and other rhumatic eye issues don't have symptoms of pain until damage has taken place. That's what makes them harder and scarier because they can be silent but damaging. Seeing a opthamologist is def. a good/important thing. Anyways, good fortune.... it's a great group no matter the journey to diagnosis and so on.. just saying it is hard to figure out sometimes. My JA is primarily in my spine, started out like that and is still my primary problem and even though it is not typical of JRA, that is the diagnosis I got. I'm a atypical case and don't really fit the norm. It confuses a lot of my doctors and they just gave me the 'best of fit' diagnosis but it's still a bit of a mystery and I have lived with this stuff since I was around 5ish.. im 31 now.. and still get told various things.... Good fortune Issadora On Wed, Mar 4, 2009 at 6:15 PM, fwlady65401 <fwlady65401@...> wrote: > Thank you so much for your warm welcome. > > I did get into some more information and I really suspect she may have > spondylitis, if it isn't reactive and doesn't go away like it should. I had > seen this and reactive on Mystery Diagnosis. But, since it wasn't her back > first, I really didn't think about looking at any other but RA. My husband > has some OA, I think, although never diagnosed, and his rheumatoid levels > are pretty high, so it could be RA. He gets issues when the weather is > crazy. > > I looked into the spondy, because her back is her main issue right now, and > it said that children start with hip pain, and then it moves to the knees > and other joints, and then the spine, and that is EXACTLY what happened with > her. We thought she had popped her hip out of joint to start with. And, it > also said it is associated with Crohn's disease, which her great uncle has a > pretty bad case of, however, he doesn't have arthritis. So, that got my > attention, I figured that whatever she has may be a " relative " of Crohn's. > And, it also made me think of her mystery stomach aches. Then, it mentioned > and I remembered the uveitis. Last night, I eliminated that as the culprit > since her eyes are fine. > > But, then today, after we were talking about her journal, and I never > mentioned the exact symptoms, but that she may have an arthritis that may go > away after she is done changing. And, she asked me outright if there was a > type that came with eye pain. I asked her if she had that, and she said that > she has had it for a couple of weeks, and had told me about it. I guess > because I didn't see it as relevant or affecting her, I didn't hear it. But, > it was in her journal. I told her about how the spondy was diagnosed by > uveitis on the show. I asked her how her eyes hurt, and she said in the back > of her eyeballs on both sides. It feels better when she closes her eyes. > > So, as I had read here to go to an opthamologist, and that was how this guy > was diagnosed with the spondylitis on the show, I decided to go ahead and > schedule an appt with the opthamologist on Monday. I would give it a wait > and see approach, except I don't want to cause her eyes harm if this is what > it is, and it will only get worse. And, of what I have gathered, the quicker > the arthritis is treated, the better the prognosis. > > And, I also figured that we may get lucky. If the dr finds uveitis in her > eyes, then she could pretty much confirm that she that it is spondylitis, > and we can know what is really going on. I am not going to count on that, > but just to check her eyes to be on the safe side, we may get a bonus while > there. It could take months to get into the rheumatologist around here. She > said the Aleve does help though, especially when combined with the warm > bath. > > There is lots of great info in the archives. You all sound like a nice > bunch. Kymberli > > > > > > > Hi, Kymberli and welcome to the list. I hope you find the answers you > > need. > > > > Your story does sound familiar. Many of the kids begin after an illness > > or injury. It could be reactive arthritis, but if it is hanging on this > > long it could be JRA. Just a few thoughts on what you have written. > > Remember there is no blood test for JRA/RA. Many kids are rf negative, > > yet still have the disease. The diagnosis is made based on the symptoms. > > The blood work helps to see how the disease is affecting the body, how > > meds are affecting the organs, or an x-ray is done to see if any joint > > damage is happening. These are just some general examples. When you say > > your husband has arthritis on occasion do you mean he has pain and > > stiffness from OA or he seems to have RA symptoms? I ask because my > > husband has recently been diagnosed with RA and he seems to be flaring > > quite a bit. They do not know if there is a genetic component or not, > > but I kind of think so. > > > > It is good that you are getting in to a ped rheumy rather quickly. Some > > kids go for months because the drs don't think of arthritis. I know my > > son was one. If she is diagnosed, many rheumy's currently take an > > aggressive stand against the arthritis and use meds quickly, which helps > > prevent joint damage. > > > > One thing I learned about strep when my oldest daughter had it > > repeatedly as a young child is that you do not always get a sore throat > > from it. Some people may have it, but just get a rash they ignore or a > > mild cold and don't realize they are actually sick with strep. Our ped > > told us that even the dog can carry the strep virus and if we had one at > > the time, she wanted the dog tested. > > > > Sure her symptoms can stop when before she goes in. The flare could > > subside. But that does not mean that she does not have anything. It is > > best to keep the journal and note when she feels the stiffness and pain > > and what if anything makes her feel better. The dr will examine her and > > feel the joints all over not just what she is complaining about at the > > time. I was always amazed that the rheumy could feel swelling in places > > that did not complain of. The experienced touch is key in my > > opinion. > > > > One more thing, please make sure that if she is diagnosed, you get her > > in for an eye exam with an eye dr and tell him/her of the diagnosis. She > > will need to be checked for uveitis which is inflammation of the eye. > > > > Hope this helps some. I am sure others will have some ideas as well. Ask > > any questions you have and let us know how she is doing, Michele ( > > 21, spondy) > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > From: < %40> [mailto: > < %40>] On > > Behalf Of fwlady65401 > > Sent: Wednesday, March 04, 2009 2:37 AM > > < %40> > > Subject: Hello, new here > > > > > > > > Hello, I am Kymberli, and I decided today that I really need to get on a > > group for what my daughter is going through, rather than blindly doing > > research online. I have done research, and have gotten very good info, > > but talking to people personally is what I and she really need now. > > > > We don't have a diagnosis yet, about what exactly is going on, but I > > have some idea. The dr just referred us to a ped rheumatologist today. I > > will find out soon when our appt is. With our insurance, I am unsure how > > I will cover it all, if they order a bunch of tests, but we really need > > to get to the bottom of this. > > > > LMK if any of this sounds familiar, but so far this is our journey. My > > 11.5yo daughter had severe hip pain, but we couldn't figure out how she > > got that way. They did an xray and over the weekend, we waited. By > > Monday, she had several more joints that caused her pain, and some were > > warm to the touch, but they looked pretty normal. So, I took her back > > in, they said the xray was normal, and did an in clinic test. The dr > > came in and said that she tested positive for strep. Huh?? None of our > > family had had strep for years, and the fevers that everyone had 6 weeks > > before were only 12 hours long. No one needed ABx. He said strep > > arthritis, and I rejoiced that it was curable and not JuvRA. > > > > So, he said they would go ahead and treat it, and to let them know if > > the pain persists after 7 days. She got better by day 3, completely > > normal, but by day 9, she was in even worse pain. By then, it was her > > hip, an ankle, one knee, one elbow she tried to not bend, her shoulder, > > and her jaw. And, she was limping again. They did the blood test, said > > it was negative for RA, the strep titers were really high, and to give > > it 2 weeks. > > > > Another week goes by, it is Friday, and she says she can't make it > > through the weekend. Her back was really killing her. She had been very > > tired, and her muscles were hurting, probably from compensation. The > > other dr does a full range of motion on her, checks her spine, and > > luckily she isn't that stiff, and does the strep test again. It is still > > positive, and so she goes on a stronger ABx. I knew the Amoxicillan > > wouldn't work on her, because she had a lot of that as a baby. But, the > > pain never got better or went away. Her back is the worst now, if she is > > sitting for 30 min, she has to lay down, move around, and take the > > Ibuprofen. By the end of the day, she needs a warm bath, but that was > > after I told her she should do this. One time I asked her what her pain > > level was, and she said 6-7. I found this impressive, because she never > > really lets on. She just limps terribly, or skips to avoid bending. > > > > So, this has been going on for 6+ weeks now. I took her back in for > > another strep test, but the dr didn't think it was necassary. I asked > > him if this was reactive arthritis, as a neighbor gave me a really good > > article. He said perhaps, but it could also be the beginning of JRA. The > > fact that she was NOT sick at all right when this started, makes me > > think it isn't reactive. That she is probably just a strep carrier. No > > one had gotten strep from her even all this time. And, we have 7 > > children. My father got the flu one time and had this happen, but hasn't > > had any other issues. However, my husband has a high rheumatoid level, > > and has arthritis on occasion. > > > > The doctor has now referred us, which is a relief, sort of. I don't want > > to go back to the Children's hospital, because they know me too well. > > Our baby has been in and out of the hospital since he was 6.5 mos old, > > and many medical issues. I think that even though he hasn't started to > > get better yet (like they promised me 3 mos ago), that he is stable for > > now, and we may have our last appt this Thursday. I am sure they have > > " hysterical mom " on his file, and I don't relish taking another child > > over there. I just don't have the heart to ask the dr to refer us to the > > farther hospital in the other direction, because even though the > > hospital has been wrong with the baby MANY times, they have been patient > > and good to us. > > > > So, back we go. Maybe all this will disappear by the time we get in. Any > > hope of that? Of what I can deduce, she may have the poly-type. The dr > > also told us to give her Aleve now, because she just isn't comfortable, > > the poor dear. And, part of her I know mourns for her trampoline and > > doing what the kids are doing, especially on the nice days. I let her do > > what she feels like, but she can't even jump around if she wanted to. > > She is going through hormonal changes right now, so I do wonder if that > > is all this is all about. She is too young (I was almost 14yo)and not > > developed enough, to start her monthly, but her body is hormonal right > > now. > > > > So, if anyone has any suggestions or stories to point us to, that would > > be really greatful. My daughter asked if she should start a journal like > > I use with our baby, and I told her most definitely!! I think it would > > give the dr great information. Thanks so much, Kymberli > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 Hi Kymberly - That is good that you are going to see an opth. Just make sure you tell him/her why you are there and what you suspect. There are Opth's that don't know what Uveitis looks like. When Grant was 5 our eye doctor asked us if Grant had ever been poked in the eye because he had scar tissure in there. We said no and that was that. 5 years later we switched doctors and were referred on because that scar tissue was from undected inflammation in his eye! probably told you this but make sure they do a slit lamp exam. That is the only way they can see inflammation in the eye. When we were 1st dx a couple years ago it was important to me to have the correct dx. Over time though, our ped rheumy has convinced me that it isn't that important. We know for sure that Grant has some form of Juvenile Arthrits. He is dx with Psoriatic but sometimes I think that he has JAS instead. The important thing is that you get it diagnosed as something and get started on medication. I am hoping that the eye appt. comes out all clear with no inflammation. Let us know! & Grant (12, PsA/Uveitis) > > > > > > Hi, Kymberli and welcome to the list. I hope you find the answers you > > > need. > > > > > > Your story does sound familiar. Many of the kids begin after an illness > > > or injury. It could be reactive arthritis, but if it is hanging on this > > > long it could be JRA. Just a few thoughts on what you have written. > > > Remember there is no blood test for JRA/RA. Many kids are rf negative, > > > yet still have the disease. The diagnosis is made based on the symptoms. > > > The blood work helps to see how the disease is affecting the body, how > > > meds are affecting the organs, or an x-ray is done to see if any joint > > > damage is happening. These are just some general examples. When you say > > > your husband has arthritis on occasion do you mean he has pain and > > > stiffness from OA or he seems to have RA symptoms? I ask because my > > > husband has recently been diagnosed with RA and he seems to be flaring > > > quite a bit. They do not know if there is a genetic component or not, > > > but I kind of think so. > > > > > > It is good that you are getting in to a ped rheumy rather quickly. Some > > > kids go for months because the drs don't think of arthritis. I know my > > > son was one. If she is diagnosed, many rheumy's currently take an > > > aggressive stand against the arthritis and use meds quickly, which helps > > > prevent joint damage. > > > > > > One thing I learned about strep when my oldest daughter had it > > > repeatedly as a young child is that you do not always get a sore throat > > > from it. Some people may have it, but just get a rash they ignore or a > > > mild cold and don't realize they are actually sick with strep. Our ped > > > told us that even the dog can carry the strep virus and if we had one at > > > the time, she wanted the dog tested. > > > > > > Sure her symptoms can stop when before she goes in. The flare could > > > subside. But that does not mean that she does not have anything. It is > > > best to keep the journal and note when she feels the stiffness and pain > > > and what if anything makes her feel better. The dr will examine her and > > > feel the joints all over not just what she is complaining about at the > > > time. I was always amazed that the rheumy could feel swelling in places > > > that did not complain of. The experienced touch is key in my > > > opinion. > > > > > > One more thing, please make sure that if she is diagnosed, you get her > > > in for an eye exam with an eye dr and tell him/her of the diagnosis. She > > > will need to be checked for uveitis which is inflammation of the eye. > > > > > > Hope this helps some. I am sure others will have some ideas as well. Ask > > > any questions you have and let us know how she is doing, Michele ( > > > 21, spondy) > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > > > From: < %40> [mailto: > > < %40>] On > > > Behalf Of fwlady65401 > > > Sent: Wednesday, March 04, 2009 2:37 AM > > > < %40> > > > Subject: Hello, new here > > > > > > > > > > > > Hello, I am Kymberli, and I decided today that I really need to get on a > > > group for what my daughter is going through, rather than blindly doing > > > research online. I have done research, and have gotten very good info, > > > but talking to people personally is what I and she really need now. > > > > > > We don't have a diagnosis yet, about what exactly is going on, but I > > > have some idea. The dr just referred us to a ped rheumatologist today. I > > > will find out soon when our appt is. With our insurance, I am unsure how > > > I will cover it all, if they order a bunch of tests, but we really need > > > to get to the bottom of this. > > > > > > LMK if any of this sounds familiar, but so far this is our journey. My > > > 11.5yo daughter had severe hip pain, but we couldn't figure out how she > > > got that way. They did an xray and over the weekend, we waited. By > > > Monday, she had several more joints that caused her pain, and some were > > > warm to the touch, but they looked pretty normal. So, I took her back > > > in, they said the xray was normal, and did an in clinic test. The dr > > > came in and said that she tested positive for strep. Huh?? None of our > > > family had had strep for years, and the fevers that everyone had 6 weeks > > > before were only 12 hours long. No one needed ABx. He said strep > > > arthritis, and I rejoiced that it was curable and not JuvRA. > > > > > > So, he said they would go ahead and treat it, and to let them know if > > > the pain persists after 7 days. She got better by day 3, completely > > > normal, but by day 9, she was in even worse pain. By then, it was her > > > hip, an ankle, one knee, one elbow she tried to not bend, her shoulder, > > > and her jaw. And, she was limping again. They did the blood test, said > > > it was negative for RA, the strep titers were really high, and to give > > > it 2 weeks. > > > > > > Another week goes by, it is Friday, and she says she can't make it > > > through the weekend. Her back was really killing her. She had been very > > > tired, and her muscles were hurting, probably from compensation. The > > > other dr does a full range of motion on her, checks her spine, and > > > luckily she isn't that stiff, and does the strep test again. It is still > > > positive, and so she goes on a stronger ABx. I knew the Amoxicillan > > > wouldn't work on her, because she had a lot of that as a baby. But, the > > > pain never got better or went away. Her back is the worst now, if she is > > > sitting for 30 min, she has to lay down, move around, and take the > > > Ibuprofen. By the end of the day, she needs a warm bath, but that was > > > after I told her she should do this. One time I asked her what her pain > > > level was, and she said 6-7. I found this impressive, because she never > > > really lets on. She just limps terribly, or skips to avoid bending. > > > > > > So, this has been going on for 6+ weeks now. I took her back in for > > > another strep test, but the dr didn't think it was necassary. I asked > > > him if this was reactive arthritis, as a neighbor gave me a really good > > > article. He said perhaps, but it could also be the beginning of JRA. The > > > fact that she was NOT sick at all right when this started, makes me > > > think it isn't reactive. That she is probably just a strep carrier. No > > > one had gotten strep from her even all this time. And, we have 7 > > > children. My father got the flu one time and had this happen, but hasn't > > > had any other issues. However, my husband has a high rheumatoid level, > > > and has arthritis on occasion. > > > > > > The doctor has now referred us, which is a relief, sort of. I don't want > > > to go back to the Children's hospital, because they know me too well. > > > Our baby has been in and out of the hospital since he was 6.5 mos old, > > > and many medical issues. I think that even though he hasn't started to > > > get better yet (like they promised me 3 mos ago), that he is stable for > > > now, and we may have our last appt this Thursday. I am sure they have > > > " hysterical mom " on his file, and I don't relish taking another child > > > over there. I just don't have the heart to ask the dr to refer us to the > > > farther hospital in the other direction, because even though the > > > hospital has been wrong with the baby MANY times, they have been patient > > > and good to us. > > > > > > So, back we go. Maybe all this will disappear by the time we get in. Any > > > hope of that? Of what I can deduce, she may have the poly-type. The dr > > > also told us to give her Aleve now, because she just isn't comfortable, > > > the poor dear. And, part of her I know mourns for her trampoline and > > > doing what the kids are doing, especially on the nice days. I let her do > > > what she feels like, but she can't even jump around if she wanted to. > > > She is going through hormonal changes right now, so I do wonder if that > > > is all this is all about. She is too young (I was almost 14yo)and not > > > developed enough, to start her monthly, but her body is hormonal right > > > now. > > > > > > So, if anyone has any suggestions or stories to point us to, that would > > > be really greatful. My daughter asked if she should start a journal like > > > I use with our baby, and I told her most definitely!! I think it would > > > give the dr great information. Thanks so much, Kymberli > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 You are very welcome. My son does have spondylitis. He was first diagnosed with pauci jra, as his ankles were the place he felt pain first. As time went on, more things were noticeably giving him pain - primarily his hips. But the pain was actually in his pelvic rim. That is where the dr felt the inflammation. Spondy affects the tendons a lot, so we began to realize it was his Achilles tendon, feet, and hands that were his sources of pain also. Spondy also can affect the organs. If your daughter is HLAB-27 positive ( a marker in the blood that is tested when spondy is suspected) organ involvement is more likely. My son is negative for this, so luckily no organ involvement. He was tested for Crohn's as he is very tall and lost weight as he grew into his height. He weighs less now than when diagnosed, but is nearly 8 inches taller. My son is negative for that luckily. As for the eyes getting the slit lamp test is so important. If it is confirmed she has some form of JRA she will need to be checked frequently. My son was checked every 3 months for the first year after diagnosis. Since he was clean, it changed to twice a year for 7 years. He is now down to once a year. It is good you are getting her checked. There is a lot of info here on the list. Georgina, the woman who was one of the founders of this list, does a wonderful job of keeping us all up to date with the latest news on JRA/RA and the various diagnoses' our kids have. This list was an absolute lifeline for my family when we first came here over 8 years ago, after was first diagnosed, and the folks here were always helpful. Please feel free to vent here when you need it. They are a supportive bunch! Michele ( 21, spondy) ________________________________ From: [mailto: ] On Behalf Of fwlady65401 Sent: Wednesday, March 04, 2009 8:16 PM Subject: Re: Hello, new here Thank you so much for your warm welcome. I did get into some more information and I really suspect she may have spondylitis, if it isn't reactive and doesn't go away like it should. I had seen this and reactive on Mystery Diagnosis. But, since it wasn't her back first, I really didn't think about looking at any other but RA. My husband has some OA, I think, although never diagnosed, and his rheumatoid levels are pretty high, so it could be RA. He gets issues when the weather is crazy. I looked into the spondy, because her back is her main issue right now, and it said that children start with hip pain, and then it moves to the knees and other joints, and then the spine, and that is EXACTLY what happened with her. We thought she had popped her hip out of joint to start with. And, it also said it is associated with Crohn's disease, which her great uncle has a pretty bad case of, however, he doesn't have arthritis. So, that got my attention, I figured that whatever she has may be a " relative " of Crohn's. And, it also made me think of her mystery stomach aches. Then, it mentioned and I remembered the uveitis. Last night, I eliminated that as the culprit since her eyes are fine. But, then today, after we were talking about her journal, and I never mentioned the exact symptoms, but that she may have an arthritis that may go away after she is done changing. And, she asked me outright if there was a type that came with eye pain. I asked her if she had that, and she said that she has had it for a couple of weeks, and had told me about it. I guess because I didn't see it as relevant or affecting her, I didn't hear it. But, it was in her journal. I told her about how the spondy was diagnosed by uveitis on the show. I asked her how her eyes hurt, and she said in the back of her eyeballs on both sides. It feels better when she closes her eyes. So, as I had read here to go to an opthamologist, and that was how this guy was diagnosed with the spondylitis on the show, I decided to go ahead and schedule an appt with the opthamologist on Monday. I would give it a wait and see approach, except I don't want to cause her eyes harm if this is what it is, and it will only get worse. And, of what I have gathered, the quicker the arthritis is treated, the better the prognosis. And, I also figured that we may get lucky. If the dr finds uveitis in her eyes, then she could pretty much confirm that she that it is spondylitis, and we can know what is really going on. I am not going to count on that, but just to check her eyes to be on the safe side, we may get a bonus while there. It could take months to get into the rheumatologist around here. She said the Aleve does help though, especially when combined with the warm bath. There is lots of great info in the archives. You all sound like a nice bunch. Kymberli > > Hi, Kymberli and welcome to the list. I hope you find the answers you > need. > > Your story does sound familiar. Many of the kids begin after an illness > or injury. It could be reactive arthritis, but if it is hanging on this > long it could be JRA. Just a few thoughts on what you have written. > Remember there is no blood test for JRA/RA. Many kids are rf negative, > yet still have the disease. The diagnosis is made based on the symptoms. > The blood work helps to see how the disease is affecting the body, how > meds are affecting the organs, or an x-ray is done to see if any joint > damage is happening. These are just some general examples. When you say > your husband has arthritis on occasion do you mean he has pain and > stiffness from OA or he seems to have RA symptoms? I ask because my > husband has recently been diagnosed with RA and he seems to be flaring > quite a bit. They do not know if there is a genetic component or not, > but I kind of think so. > > It is good that you are getting in to a ped rheumy rather quickly. Some > kids go for months because the drs don't think of arthritis. I know my > son was one. If she is diagnosed, many rheumy's currently take an > aggressive stand against the arthritis and use meds quickly, which helps > prevent joint damage. > > One thing I learned about strep when my oldest daughter had it > repeatedly as a young child is that you do not always get a sore throat > from it. Some people may have it, but just get a rash they ignore or a > mild cold and don't realize they are actually sick with strep. Our ped > told us that even the dog can carry the strep virus and if we had one at > the time, she wanted the dog tested. > > Sure her symptoms can stop when before she goes in. The flare could > subside. But that does not mean that she does not have anything. It is > best to keep the journal and note when she feels the stiffness and pain > and what if anything makes her feel better. The dr will examine her and > feel the joints all over not just what she is complaining about at the > time. I was always amazed that the rheumy could feel swelling in places > that did not complain of. The experienced touch is key in my > opinion. > > One more thing, please make sure that if she is diagnosed, you get her > in for an eye exam with an eye dr and tell him/her of the diagnosis. She > will need to be checked for uveitis which is inflammation of the eye. > > Hope this helps some. I am sure others will have some ideas as well. Ask > any questions you have and let us know how she is doing, Michele ( > 21, spondy) > > > > > > > > > > ________________________________ > > From: <mailto: %40> [mailto: <mailto: %40> ] On > Behalf Of fwlady65401 > Sent: Wednesday, March 04, 2009 2:37 AM > <mailto: %40> > Subject: Hello, new here > > > > Hello, I am Kymberli, and I decided today that I really need to get on a > group for what my daughter is going through, rather than blindly doing > research online. I have done research, and have gotten very good info, > but talking to people personally is what I and she really need now. > > We don't have a diagnosis yet, about what exactly is going on, but I > have some idea. The dr just referred us to a ped rheumatologist today. I > will find out soon when our appt is. With our insurance, I am unsure how > I will cover it all, if they order a bunch of tests, but we really need > to get to the bottom of this. > > LMK if any of this sounds familiar, but so far this is our journey. My > 11.5yo daughter had severe hip pain, but we couldn't figure out how she > got that way. They did an xray and over the weekend, we waited. By > Monday, she had several more joints that caused her pain, and some were > warm to the touch, but they looked pretty normal. So, I took her back > in, they said the xray was normal, and did an in clinic test. The dr > came in and said that she tested positive for strep. Huh?? None of our > family had had strep for years, and the fevers that everyone had 6 weeks > before were only 12 hours long. No one needed ABx. He said strep > arthritis, and I rejoiced that it was curable and not JuvRA. > > So, he said they would go ahead and treat it, and to let them know if > the pain persists after 7 days. She got better by day 3, completely > normal, but by day 9, she was in even worse pain. By then, it was her > hip, an ankle, one knee, one elbow she tried to not bend, her shoulder, > and her jaw. And, she was limping again. They did the blood test, said > it was negative for RA, the strep titers were really high, and to give > it 2 weeks. > > Another week goes by, it is Friday, and she says she can't make it > through the weekend. Her back was really killing her. She had been very > tired, and her muscles were hurting, probably from compensation. The > other dr does a full range of motion on her, checks her spine, and > luckily she isn't that stiff, and does the strep test again. It is still > positive, and so she goes on a stronger ABx. I knew the Amoxicillan > wouldn't work on her, because she had a lot of that as a baby. But, the > pain never got better or went away. Her back is the worst now, if she is > sitting for 30 min, she has to lay down, move around, and take the > Ibuprofen. By the end of the day, she needs a warm bath, but that was > after I told her she should do this. One time I asked her what her pain > level was, and she said 6-7. I found this impressive, because she never > really lets on. She just limps terribly, or skips to avoid bending. > > So, this has been going on for 6+ weeks now. I took her back in for > another strep test, but the dr didn't think it was necassary. I asked > him if this was reactive arthritis, as a neighbor gave me a really good > article. He said perhaps, but it could also be the beginning of JRA. The > fact that she was NOT sick at all right when this started, makes me > think it isn't reactive. That she is probably just a strep carrier. No > one had gotten strep from her even all this time. And, we have 7 > children. My father got the flu one time and had this happen, but hasn't > had any other issues. However, my husband has a high rheumatoid level, > and has arthritis on occasion. > > The doctor has now referred us, which is a relief, sort of. I don't want > to go back to the Children's hospital, because they know me too well. > Our baby has been in and out of the hospital since he was 6.5 mos old, > and many medical issues. I think that even though he hasn't started to > get better yet (like they promised me 3 mos ago), that he is stable for > now, and we may have our last appt this Thursday. I am sure they have > " hysterical mom " on his file, and I don't relish taking another child > over there. I just don't have the heart to ask the dr to refer us to the > farther hospital in the other direction, because even though the > hospital has been wrong with the baby MANY times, they have been patient > and good to us. > > So, back we go. Maybe all this will disappear by the time we get in. Any > hope of that? Of what I can deduce, she may have the poly-type. The dr > also told us to give her Aleve now, because she just isn't comfortable, > the poor dear. And, part of her I know mourns for her trampoline and > doing what the kids are doing, especially on the nice days. I let her do > what she feels like, but she can't even jump around if she wanted to. > She is going through hormonal changes right now, so I do wonder if that > is all this is all about. She is too young (I was almost 14yo)and not > developed enough, to start her monthly, but her body is hormonal right > now. > > So, if anyone has any suggestions or stories to point us to, that would > be really greatful. My daughter asked if she should start a journal like > I use with our baby, and I told her most definitely!! I think it would > give the dr great information. Thanks so much, Kymberli > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2011 Report Share Posted March 2, 2011 Hello, I am new to the group and looking for an AP doctor. I have Psoriatic Arthritis, and am currently taking LDN. (I get this on my own) It is helpful, but I have heard from others that AP with LDN (low dose naltrexone), or AP on its own works better. I am in Southern Ontario , Canada, and one of the drawbacks of publicly funded health care is that Dr.'s rarely think outside the box, as they are overworked. The Pharmaceutical industry also influences them a great deal. I do have a drug plan, but need to find a doctor to prescribe Abx. I can also go to upstate New York, but then I would have to pay for doctor's services. Kinga Quote Link to comment Share on other sites More sharing options...
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