Guest guest Posted February 16, 2005 Report Share Posted February 16, 2005 Hi Kim, It should be easy Kim, it was for me. I simply corrected my diet and started exercising and i started feeling better immediately. If i were you i would go to knowthecause.com and read up on fungus and the roll it plays in illness. Or you could buy the " Eat Right For Your Blood Type. " Until you figure out what you should eat and not eat i would stop the sugar, breads, potatoes, corn (any kind of corn like can corn, corn chips, corn tortillas, *no corn*), peanuts and pasta and you should probably stop the dairy as well. I would eat organic meets and nuts and veggies. Eat everything except for what i mentioned above. You will fill better in no time. Your diet is what is causing your anxiety, it's not an Effexsor deficiency. Connie > > > hi, > > Recently I talked with my GP about my anxiety and possibly getting on > something to help. He suggested effexor. Well after reading lots of > information on this I've decided not to. Here's my story in a nut > shell. I'm 38 with one child who is a bit demanding on my time since > she was born with orthopedic problems and needs help to do certain > things and goes to therapy 3x a week. She's 4 and extremely smart so > she can be a handful at times. My husband is 55 and not in the best > of shape. He refuses to anything about himself so I've given up > nagging at him. At times I feel like I do it all. The > shopping/groceries/cleaning/garbage/etc. He does the walks in the > winter and the grass in the summer. I make him sound horrible but > he's not. I need to learn to ask for help and he needs to learn to > listen. LOL. Anyways that's me...eager to please and never wanting > to burden anyone so I take on more than I can chew. I realize that > needs to stop. I'm also have mysthenia gravis...neuromuscular > dieases. I take daily meds for that so I have trouble with lots of > other medicines. I checked with neurologist and he said give effexor > a try but give him a call if I have any problems. > After talking with GP and really thinking about my problems I feel I > could do more with stress management and meditation then taking a pill > and suffering the side effects. I would hate to have an adverse > reaction and hurt myself or a loved one. > > So although I'm not going to take the meds I would like to stay in > this group and find out how others deal with anxiety...etc. > > Thanks for reading, > Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2005 Report Share Posted February 16, 2005 Hello and welcome, It's tough to find some of the root causes of anxiety. You mentioned your husband doesn't do much around the house; that would be enough to get me worked up. There's all kinds of reasons: physical and mental for anxiety. Have you had a complete physical lately? Have you tried seeing a psychologist about it? HOw are your sleep patterns? Is there something you're not facing or are affraid to deal with? I'm no psychologist, just going on good sense here, Bow. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 Hi Tricia, Welcome to the group. Unfortunately at age two the only way to correct plagio is through surgery. Whether or not this would be a consideration for you of course depends on Ethan's severity. What your doctor told you about it getting better on its own is false. After about age two, the skull no longer changes shape, but instead just layers hard bone on top of what is already there, thus retaining the same headshape. also has an older plagio group if you'd be interested in joining there. We have had a couple members kids have surgery to correct plagio with great results. I've been around the group a couple years now and have never heard plagio be associated w/cleft lip/palate. Have you considered getting a second opinion in getting your son's plagio evaluated? How would you rate his severity? There are assessments in our links section. Good luck with your journey. , mom to Hannah (age 2), DOCgrad Cape Cod, Ma http://hannahsnoggin.typepad.com --- In Plagiocephaly , " Tricia L " <howsoonisnow@c...> wrote: > Hi, > My name is Tricia. I have a two year old son who has plagiocephaly. He was also born with a cleft lip and palate. > I have never done any research on plagio before. > > Our plastic surgeon believes the head will correct itself and it seems to be such a gradual process. I am wondering if I am being impatient. > > My son's name is Ethan. His cleft is unilateral of the right side. The plagio is also on the right front. His eye bulges a little and the right side of his skull does too. > > Our pediatrician believes the plagio and cleft are related in some form. He doesn't have a syndrome though. > > Anyone else have experience with a cleft and plagio? Or with plagio that the doctor said would correct itself over time? > Thanks! > Tricia > Las Vegas, NV > mom to 8, Abigail 4, Ethan 2 uclp, plagio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 Hey Tricia, It's from cA, LOL!! Of course you know me and Kaden by now, he also has plagio and torticollis. They said that his plagio is very small and that they think he will outgrow his, this was from EI though, he meets with the neuroligist tomorow morning, hopefully he will be able to shed some light on this. Kadens head also seems to bulge a little on the right side too. I wonder maybe if they could be related. They feel his torticollis is all related to positioning in the utero and the way he prefers to lay. I will update how the neurologist goes tomorow mommy to Kaden 12 wks, BCLP, torti, plagio Austin 5 mild cerebal palsy Step Mommy to 12, 6 and twins 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 , I had no idea that Kaden had plagio. What is torticollis? Is that part of a syndrome or just coincidence? Is Kaden receiving a helmet or bands? Tricia Re: New here > > Hey Tricia, > > It's from cA, LOL!! Of course you know me and Kaden by now, he > also has plagio and torticollis. They said that his plagio is very small > and that they think he will outgrow his, this was from EI though, he meets > with the neuroligist tomorow morning, hopefully he will be able to shed > some light on this. > > Kadens head also seems to bulge a little on the right side too. I wonder > maybe if they could be related. They feel his torticollis is all related > to positioning in the utero and the way he prefers to lay. > > I will update how the neurologist goes tomorow > > > mommy to Kaden 12 wks, BCLP, torti, plagio > Austin 5 mild cerebal palsy > Step Mommy to 12, 6 and twins 3 > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 , I am so disappointed to hear his head won't change anymore. It made me feel a little betrayed by the doctors. I wish I had the opportunity to make a choice on the banding. My husband felt the same way. I don't know how to rate the severity. Most people say they don't notice it. My husband and I are very aware though and so are the doctors. Often, people will ask me if he bumped his eye. I don't think it's severe by any means. Just a little askew! I will try to get a picture of it today if I can. He's not the most cooperative two year old! I certainly don't want to go the surgery route. He's already had three sureries for his cleft and it's so frightening. Tricia Re: New here > > > Hi Tricia, > Welcome to the group. Unfortunately at age two the only way to > correct plagio is through surgery. Whether or not this would be a > consideration for you of course depends on Ethan's severity. What > your doctor told you about it getting better on its own is false. > After about age two, the skull no longer changes shape, but instead > just layers hard bone on top of what is already there, thus > retaining the same headshape. also has an older plagio group > if you'd be interested in joining there. We have had a couple > members kids have surgery to correct plagio with great results. > I've been around the group a couple years now and have never heard > plagio be associated w/cleft lip/palate. Have you considered > getting a second opinion in getting your son's plagio evaluated? > How would you rate his severity? There are assessments in our links > section. Good luck with your journey. > , mom to Hannah (age 2), DOCgrad > Cape Cod, Ma > http://hannahsnoggin.typepad.com > > >> Hi, >> My name is Tricia. I have a two year old son who has > plagiocephaly. He was also born with a cleft lip and palate. >> I have never done any research on plagio before. >> >> Our plastic surgeon believes the head will correct itself and it > seems to be such a gradual process. I am wondering if I am being > impatient. >> >> My son's name is Ethan. His cleft is unilateral of the right > side. The plagio is also on the right front. His eye bulges a > little and the right side of his skull does too. >> >> Our pediatrician believes the plagio and cleft are related in some > form. He doesn't have a syndrome though. >> >> Anyone else have experience with a cleft and plagio? Or with > plagio that the doctor said would correct itself over time? >> Thanks! >> Tricia >> Las Vegas, NV >> mom to 8, Abigail 4, Ethan 2 uclp, plagio > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 Tricia, torticollis is where the muscles in his neck are causing his head to tilt, they said that his muscles are weak, he can passivly move his head both ways but activley he struggles to turn to the right. They said that his is all due to positioning and favoring one side, he has not been diagnosed with any syndromes and they said that his cleft appears to be a isolated case. I am not sure what they will be doing with the plagio, we had to cancel today due to the weather, we do not go now until March 10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 Tricia, torticollis is where the muscles in his neck are causing his head to tilt, they said that his muscles are weak, he can passivly move his head both ways but activley he struggles to turn to the right. They said that his is all due to positioning and favoring one side, he has not been diagnosed with any syndromes and they said that his cleft appears to be a isolated case. I am not sure what they will be doing with the plagio, we had to cancel today due to the weather, we do not go now until March 10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 Hi Tricia, Welcome to the group. I just saw the picture of Ethan - he is adorable. With eyes that blue he is going to be a ladies man As for his current headshape. I hate to tell you but, most "self" correction is going to happen by 2 years of age. Maybe a tiny, tiny bit will happen up until about 4-5, but it's unlikely. The sutures of the skull are mostly fused by 24 months. After 2 years if the plagio is a severe case then surgery is sometimes performed to correct the head shape. We have had a couple members who have had the surgery. There is an older plagio kids support group on . Hopefully someone has the link otherwise you can search for it in the section. A lot of pediatricians and surgeons still believe it will round out. Some do and some don't. There is no way to know for sure until it's too late to treat without surgery. As for cleft palette and plagio being related I've never heard of that. mom to na DOC Grad South Carolina www.thefilyaws.com Tricia L <howsoonisnow@...> wrote: Hi, My name is Tricia. I have a two year old son who has plagiocephaly. He was also born with a cleft lip and palate. I have never done any research on plagio before. Our plastic surgeon believes the head will correct itself and it seems to be such a gradual process. I am wondering if I am being impatient. My son's name is Ethan. His cleft is unilateral of the right side. The plagio is also on the right front. His eye bulges a little and the right side of his skull does too. Our pediatrician believes the plagio and cleft are related in some form. He doesn't have a syndrome though. Anyone else have experience with a cleft and plagio? Or with plagio that the doctor said would correct itself over time? Thanks! Tricia Las Vegas, NV mom to 8, Abigail 4, Ethan 2 uclp, plagioFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 Hi Tricia, Welcome to the group. I just saw the picture of Ethan - he is adorable. With eyes that blue he is going to be a ladies man As for his current headshape. I hate to tell you but, most "self" correction is going to happen by 2 years of age. Maybe a tiny, tiny bit will happen up until about 4-5, but it's unlikely. The sutures of the skull are mostly fused by 24 months. After 2 years if the plagio is a severe case then surgery is sometimes performed to correct the head shape. We have had a couple members who have had the surgery. There is an older plagio kids support group on . Hopefully someone has the link otherwise you can search for it in the section. A lot of pediatricians and surgeons still believe it will round out. Some do and some don't. There is no way to know for sure until it's too late to treat without surgery. As for cleft palette and plagio being related I've never heard of that. mom to na DOC Grad South Carolina www.thefilyaws.com Tricia L <howsoonisnow@...> wrote: Hi, My name is Tricia. I have a two year old son who has plagiocephaly. He was also born with a cleft lip and palate. I have never done any research on plagio before. Our plastic surgeon believes the head will correct itself and it seems to be such a gradual process. I am wondering if I am being impatient. My son's name is Ethan. His cleft is unilateral of the right side. The plagio is also on the right front. His eye bulges a little and the right side of his skull does too. Our pediatrician believes the plagio and cleft are related in some form. He doesn't have a syndrome though. Anyone else have experience with a cleft and plagio? Or with plagio that the doctor said would correct itself over time? Thanks! Tricia Las Vegas, NV mom to 8, Abigail 4, Ethan 2 uclp, plagioFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 Dear Missy, Welcome to the group. I am sorry I do not have any answers for you because many of us are going through the problem of trying to figure out just exactly what is wrong. However, do not give up, keep looking for the doctor who can figure out how to make you feel better. You are the best judge of how you feel. Unfortunately, it can be expensive, and there are no guarantees. I had a bout with a serous pain a few weeks ago that felt like gall bladder/gall stone problem, but everything turned out negative. I saw three different doctors and they could not figure out what caused it. I am just hoping that the fact that all blood test, unltrasound, x-ray and MRI were negative, that whatever it was will not come back. And I feel good. Good luck and keep asking question and what all those tests mean. And your collection of all your test resultsand notes from the doctors, and having them with you, is very smart. Continue collecting them. I have just sarted a diary with all the dates and results and medicines etc. I shuld have done it a long time ago! Clara from OR [ ] New Here Hi my name is Missy. I have been sick for about three. First I when about a year with pains in between my chest my dr. keeped telling me it was reflux disease. One night I couldn't stand the pain anymore so I went to the ER. My liver test were high They tested me for hep.A,B,C.(they came back negative) Then the dr said that it could be my gallbladder. I ended up having gallstones. I had gallbadder surgery on Jan 18, 2004. For the next six month I felt great but then I started to fell sick again. I was have the same pains, my arms and legs were itchy, I was very tired and I couldn't seem to stay awake. I went to my dr she told me I had reflux disease. I when back a few month later and I told I was still not felling well and That I wanted to go see the dr that did my gallbladder surgery because the pains were the same before my gallbladder surgery. I went to him and he had me have a MRI and a blood test. He said maybe a stone was stuck in the duct. They test didn't find any thing but the liver test came back abnormal. He was going to send me to see a gast. doctor. But in the mean time one morning I wake my eyes looked yellow and my knees hurt and as the day when on my knees hurt so bad that I was having a hard time walking and then the next day my hands started to hurt. I called my dr two weeks later(I should of called earlier). I ended up seeing my dr's nurse and she ended up having me have some blood tests done. I did end up going to see the gast. dr next and he talked to me and said that if I had and pains to call him. I told him that I had same test done from me dr and he when and looked up the test that I had. The A,B,C, test came back negative for the second time, the iron test show high iron(they thought maybe hemochromatosis). So he wanted me to have a liver biopsy done. The liver biopsy show that something was wrong but he didn't know what but he said that it didn't look like hemochromatosis. He said that it look like some type of hepatitis. He ended up calling me a few days later and said that it looked like I had autoimmune hepatitis. But he make an appointment for me with a hepalogist for a second opinion (for a liver specialist). He did start me on 60 mg a day of prednisone. I go see the specialist on March 1. I have been all over the net looking for information about AIH and prednisone. I have been taking prednisone for about aweek now and I feel better (but I dont like seeing all the side effects that this drug can cause). I'm going to see the gast dr on Thursday I would like to ask him questions but I'm not sure what I should ask. Plus today I when and change my regular dr to someone that was highly recommended to me and I went and got copies for all the tests (blood and liver biopsy) that I had the lady gave me all the way up to jan 2004. I sorry that this is so long but thanks for listening. I'm glad to find this group and see that I'm not alone. Missy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 Hi missy, I am new to this group as well, i have had some emails wellcoming me to the group which made me feel good. As you say it is good to know that your are not alone especially at the begining of AIH when if you are like me you don,t really know what is happening to your body and what the long term for AIH sufferers hold. It is good to read about it in plain english and be able to understand more. margaretspecialblueyez <q_bearz@...> wrote: Hi my name is Missy. I have been sick for about three. First I when about a year with pains in between my chest my dr. keeped telling me it was reflux disease. One night I couldn't stand the pain anymore so I went to the ER. My liver test were high They tested me for hep.A,B,C.(they came back negative) Then the dr said that it could be my gallbladder. I ended up having gallstones. I had gallbadder surgery on Jan 18, 2004. For the next six month I felt great but then I started to fell sick again. I was have the same pains, my arms and legs were itchy, I was very tired and I couldn't seem to stay awake. I went to my dr she told me I had reflux disease. I when back a few month later and I told I was still not felling well and That I wanted to go see the dr that did my gallbladder surgery because the pains were the same before my gallbladder surgery. I went to him and he had me have a MRI and a blood test. He said maybe a stone was stuck in the duct. They test didn't find any thing but the liver test came back abnormal. He was going to send me to see a gast. doctor. But in the mean time one morning I wake my eyes looked yellow and my knees hurt and as the day when on my knees hurt so bad that I was having a hard time walking and then the next day my hands started to hurt. I called my dr two weeks later(I should of called earlier). I ended up seeing my dr's nurse and she ended up having me have some blood tests done. I did end up going to see the gast. dr next and he talked to me and said that if I had and pains to call him. I told him that I had same test done from me dr and he when and looked up the test that I had. The A,B,C, test came back negative for the second time, the iron test show high iron(they thought maybe hemochromatosis). So he wanted me to have a liver biopsy done. The liver biopsy show that something was wrong but he didn't know what but he said that it didn't look like hemochromatosis. He said that it look like some type of hepatitis. He ended up calling me a few days later and said that it looked like I had autoimmune hepatitis. But he make an appointment for me with a hepalogist for a second opinion (for a liver specialist). He did start me on 60 mg a day of prednisone. I go see the specialist on March 1. I have been all over the net looking for information about AIH and prednisone. I have been taking prednisone for about aweek now and I feel better (but I dont like seeing all the side effects that this drug can cause). I'm going to see the gast dr on Thursday I would like to ask him questions but I'm not sure what I should ask. Plus today I when and change my regular dr to someone that was highly recommended to me and I went and got copies for all the tests (blood and liver biopsy) that I had the lady gave me all the way up to jan 2004. I sorry that this is so long but thanks for listening. I'm glad to find this group and see that I'm not alone. Missy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 Hi Missy Welcome to the group. Don't worry about the more serious prednisone side effects at this point. They usually don't start until you've been on a high dose for many months, which hopefully won't be necessary. The most important thing for you to know right now is how to properly take prednisone. You cannot stop taking it suddenly. You have to slowy wean off it. And try not to miss doses. You should take prednisone early in the morning, before 9AM. If this hasn't been explained to you, be sure to ask the hepatologist/gastroentorologist to explain it to you. Regards Elaine Long Island NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 Re: new here > > Yuo do not need herbal supplements. You need a doc who knows about hormones > ASAP. You must get off the prempro and get bio-identical hormones in order > to feel well. Do your homework and find a different doc from > http://www.geocities.com/thyroide http://www.womensinternational.com > Gracia > > > > > > hi all, > > I have been reading all the posts, > > I have a few questions maybe you all can set me in the right direction > > I have been on Armour thyroid for 3 years, > > I started out being extremely tired, I mean like I can't get out of bed > > tired, dark circles > > under my eyes, very dry skin, hair loss, ache all over, doctor did a ths > > test and decided I needed > > thyroid meds, so he put me on synthroid for a month which did nothing for > me > > so he decided to switch me to Armour 32.5 and what a world of difference > > but it seems that the last year I have had a rough time, I itch extremely > , > > am very dry, my hair does not fall out anymore, and I am not tired.but I > > just don't feel right > > I take a low dose of prem/pro I am over menopause(I am 52) but I have very > > thin bones, I take fossomax, woman's multivitamin I am very thin boned > > I have been just getting the ths tests which other tests would you > recommend > > for me to take > > I just don't feel right at times, I have gone through an extremely > stressful > > year but I just want to get my body to feel good. > > what herbal supplements would be good for me and to help this awful > > itching<This may sound strange but it seems to be my neck and armpits that > > itch the worst. > > thanks for any help and I will continue to read and learn from you all > > Donna > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2005 Report Share Posted March 30, 2005 Welcome Trish, You are amongst friends here who have experienced the surgery you have. You will also find some young friends. Hope you find support from the group. Aussie Margaret New here > > > > Hi I'm new here. My name is Trish and I just received a total hip > replacement (ceramic socket, titanium hip) a little over a month ago. > I'm still going through physical therapy three times a week. I had > to get a replacement because I developed Avascular Necrosis in both > hips because of my Sickle Cell. Last year my doctors did a surgery on > both hips to buy me some time before I had to get a replacement, I'm > only 21 so my doctors were very hesistant about replacing it so soon. > However the left hip (which was the worse one and the one they did > the surgery on first) fractured some time in September or October. So > this December when I had my 6 month check-up, they told me about the > fracture and that I needed to get it replaced. So now that I have > gotten my replacement I guess I need to talk to other people who have > been through this. I hope I didn't write too much, I've been told > countless times that I tend to talk too much. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2005 Report Share Posted March 30, 2005 You sound like if it is JRA then it is most likely a poly. Most systemics experience high fevers and organ inflammation and are usually really sick during onset. Its still possible to have a rash with or poly so you could probably relate the rash to those. Not that I'm a doctor or anything but from what your saying it could be a poly. I hope its neither and just a reactive type thing because obviously having JRA would be a bad thing, but hopefully your doctors will be able to figure it out. (poly JRA and Spondy, 20) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2005 Report Share Posted March 30, 2005 Not so much related but it is possible. I get random rashes with flares all the time and I'm not systemic. It's not a " typical " poly symptom but its possible.. but truthfully speaking nothing is really typical with a disease.. its just a weird cruddy disease to have.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2005 Report Share Posted March 30, 2005 Thanks...I didn't know that having a rash was related to poly. On Wed, 30 Mar 2005 21:52:57 EST, bncknwurnumber@... <bncknwurnumber@...> wrote: > > You sound like if it is JRA then it is most likely a poly. Most systemics > experience high fevers and organ inflammation and are usually really sick > during onset. Its still possible to have a rash with or poly so you could > probably relate the rash to those. Not that I'm a doctor or anything but from what > your saying it could be a poly. I hope its neither and just a reactive type > thing because obviously having JRA would be a bad thing, but hopefully your > doctors will be able to figure it out. > > (poly JRA and Spondy, 20) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2005 Report Share Posted March 30, 2005 , Firstly, how brilliant of you to be searching and trying to learn about what is going on with you at 14. You must be very mature. Saying that, you must also be ready to learn some things that you may or may not like about your situation, so be careful of " half truths and myths " that you may find on the internet about arthritis or whatever else you are investigating about your health. My son is classified as systemic onset JRA and presented with almost 4 years of fevers that would last for weeks or months at a time. Fevers are most certainly a classic symptom of systemic, but can also happen " typically " less often with poly or pauci. I'm guessing that if you found this site, you've already been to arthritis.org and read up on JRA there. Mystifying rashes that change by the hour around the body are also typical for systemic. The RF and ANA tests can frequently be negative, even for those with JRA. I cannot tell you what you have, but can tell you that diagnosis of JRA is a process of elimination of other things, be it viral, infectious, autoimmune, lymes, etc. You've taken the step to see a rheumatologist, which is great. If at all possible, it should be a pediatric rheumy. You can count on us to support you and answer any specific questions you may have. Stacia and Hunter systemic, iritis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2005 Report Share Posted March 31, 2005 It was a pediatric rheumatologist that we've been seeing. She's on vacation this week but we're going to call back on Monday and see if we can't do something different with meds...the Voltaren really isn't doing much. Thanks, On Thu, 31 Mar 2005 06:18:53 -0000, staciar101 <staciar@...> wrote: > > > , > > Firstly, how brilliant of you to be searching and trying to learn > about what is going on with you at 14. You must be very mature. > Saying that, you must also be ready to learn some things that you > may or may not like about your situation, so be careful of " half > truths and myths " that you may find on the internet about arthritis > or whatever else you are investigating about your health. > > My son is classified as systemic onset JRA and presented with almost > 4 years of fevers that would last for weeks or months at a time. > Fevers are most certainly a classic symptom of systemic, but can > also happen " typically " less often with poly or pauci. I'm guessing > that if you found this site, you've already been to arthritis.org > and read up on JRA there. Mystifying rashes that change by the hour > around the body are also typical for systemic. The RF and ANA tests > can frequently be negative, even for those with JRA. > > I cannot tell you what you have, but can tell you that diagnosis of > JRA is a process of elimination of other things, be it viral, > infectious, autoimmune, lymes, etc. You've taken the step to see a > rheumatologist, which is great. If at all possible, it should be a > pediatric rheumy. You can count on us to support you and answer any > specific questions you may have. > > Stacia and Hunter systemic, iritis > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2005 Report Share Posted March 31, 2005 -... welcome to the group. I hope you get some answers soon and a medciation that helps. I dont think you can be systemic without the fevers, altough you can be systemic without the rashes. I wish you painfree days... Hugs Helen and (7,systemic) -- In , " sarsarsar90 " <scsarah@g...> wrote: > > > I've been having problems with many of my joints (hip, toe, thumb, > knees) starting with the hip near the beginning of February. All > blood > tests came back normal (RF-, ANA-). Finally I was referred to a > rheumatologist and had an appointment last week. The rheumy didn't > actually diagnose me with JRA because there's a chance that it may be > reactive, reacting to a upper respiratory infection I had back in > January. She does think that it's pretty probable that it is JRA, as > my uncle also had JRA. I was put on Voltaren 50mg 2x/day (along with > Prevacid), but it doesn't seem like it's really doing anything. > Anyway, I've had a rash on my face and sometimes on my hands that > looks very similar to many of the photos and has been lightening with > the Voltaren, but no fevers. Is it possible to have systemic JRA > without fevers? > (14, not yet diagnosed) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Welcome, Kathy. We are here for you. I have only one new hip, but I fully understand the hating the dependence. I hope you and hubby can take it all as a learning experience. Perhaps he needs to know more about all the stuff you do that he is not really aware of now. We all grow through being forced to do what we would rather not do. I am much more assertive in my kitchen now that I have had to give it up for two years. It is awful not knowing where everything is and how much food is in the cupboard or freezer! I had a farm and six kids while hubby worked two jobs, and I was used to being in charge of everything. Then I found myself not only unable to handle, but disinterested in everything. It was a tough time coming back, let me tell you. I pitched more than one fit. It has been a year and my daughter is just now beginning to like me again. Fortunately, hubby has always liked me, no matter what I am. I am so blessed! We will walk with you through this. Just hang on! You will find someone here most likely, day or night. I have found great help here through my nights of pain. Perhaps I need to say THANKS to all of them. They have been such a help to me. Hugs MargeGood Morning All,My name is Kathy. I am 36 years old and I am looking at my second total hip this week on Wednedsay. I had the left done in Feb '99 and will now have the right one done. Although I have been through this before, I am still nervous. I don't relish the thought of being dependent on others. I am an active mother of 3 children ages 16,14, and 8. It will be hard for me to watch Dad take care of the things with the children that I am used to doing (girl scouts, musiclessons, etc,). I look forward to hearing from you. I just located this group over the weekend--wish I had discovered it sooner.Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 kathy.... i am 2 weeks post op.......i too......was so scared of the dependancy......we are here for you ... my fist week i cried everyday...because i had to ask for everything.....my husband would pet my head and say..in the scheme of things it is ashort time...just relax and be patient...heal and everything will be fine..watch how your chlildren rLLY.. good luck this is a great website with the finexst folks ever....marge <palybami@...> wrote: Welcome, Kathy. We are here for you. I have only one new hip, but I fully understand the hating the dependence. I hope you and hubby can take it all as a learning experience. Perhaps he needs to know more about all the stuff you do that he is not really aware of now. We all grow through being forced to do what we would rather not do. I am much more assertive in my kitchen now that I have had to give it up for two years. It is awful not knowing where everything is and how much food is in the cupboard or freezer! I had a farm and six kids while hubby worked two jobs, and I was used to being in charge of everything. Then I found myself not only unable to handle, but disinterested in everything. It was a tough time coming back, let me tell you. I pitched more than one fit. It has been a year and my daughter is just now beginning to like me again. Fortunately, hubby has always liked me, no matter what I am. I am so blessed! We will walk with you through this. Just hang on! You will find someone here most likely, day or night. I have found great help here through my nights of pain. Perhaps I need to say THANKS to all of them. They have been such a help to me. Hugs MargeGood Morning All,My name is Kathy. I am 36 years old and I am looking at my second total hip this week on Wednedsay. I had the left done in Feb '99 and will now have the right one done. Although I have been through this before, I am still nervous. I don't relish the thought of being dependent on others. I am an active mother of 3 children ages 16,14, and 8. It will be hard for me to watch Dad take care of the things with the children that I am used to doing (girl scouts, musiclessons, etc,). I look forward to hearing from you. I just located this group over the weekend--wish I had discovered it sooner.Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 ---Kathy, before you go ahead with a total hip replacement, check out a new procedure being done that preserves your bone stock and doesn't require a stem into the femur. It's called hip Resurfacing, and I'm trying to get a surgery date right now for it. Go to surfacehippy And scroll down a ways to the messages. You may have to register, but I'm not sure because you already have a account. A friend of mine just had this resurfacing surgery on Tuesday. Another site to check out is http://www.activejoints.com Awesome things they are doing now days. ..... Maxine In Joint Replacement , " kathyfrog86 " <twagner55@c...> wrote: > > > Good Morning All, > My name is Kathy. I am 36 years old and I am looking at my second > total hip this week on Wednedsay. I had the left done in Feb '99 and > will now have the right one done. Although I have been through this > before, I am still nervous. I don't relish the thought of being > dependent on others. I am an active mother of 3 children ages 16, > 14, > and 8. It will be hard for me to watch Dad take care of the things > with the children that I am used to doing (girl scouts, music > lessons, > etc,). I have metal/poly on the left but I am getting ceramic on > ceramic this time. Does anybody have one of each? How do they > compare. I look forward to hearing from you. I just located this > group over the weekend--wish I had discovered it sooner. > > Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Hi Kathy, I had my hip replacement done five years April 12 and my Knee replacement done three years ago both on my right side I was 57 when I started my operations you are so young .. I just wanted to welcome you to this group and I wish you the best of luck with you comming operation you are lucky to find this group their are a lot of nice people here .Well you have a nice day, -------------- Original message -------------- > > > > Good Morning All, > My name is Kathy. I am 36 years old and I am looking at my second > total hip this week on Wednedsay. I had the left done in Feb '99 and > will now have the right one done. Although I have been through this > before, I am still nervous. I don't relish the thought of being > dependent on others. I am an active mother of 3 children ages 16, > 14, > and 8. It will be hard for me to watch Dad take care of the things > with the children that I am used to doing (girl scouts, music > lessons, > etc,). I have metal/poly on the left but I am getting ceramic on > ceramic this time. Does anybody have one of each? How do they > compare. I look forward to hearing from you. I just located this > group over the weekend--wish I had discovered it sooner. > > Kathy > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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