Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Hello Bonny, first of all, what state do you live in? Here in california there is a special program, a grant set aside, so that all kids with JRA are given free medical care. What kind of insurance do you have? We have lots of people in here that have hit brick walls and this message board is very resourceful. We all know what your going through, sometimes it helps just by reading what others have posted. What specific questions can we help you with? > Hello everybody, > I am the mother of a 3 year old daughter who has been diagnose since > the age of 2, however it took us 1 year to get his diagnosis... > My daughter sami, is having nothing but problems....she is effected > in every joint from her neck to her toes. We are having problems even > finding treatment for her, due to our insurance. Her last dr. treated > her as if she was an adult...gave her far too many meds and had never > treated children under the age of 10 before. Because we cant find a > rheumatologist to take her(due to her age), our family dr. dropped > her as a patient. We were accused of not taking it seriously enough. > Every corner i turn...i hit a brick wall...She is always in > pain...can hardly walk...how can i not take that seriously??? > I am pleased to have come accross this site...i dont have any kind of > a support group. I would love to speak with anybody who understands > what we are going through. I dont have much advise to give yet....but > i am certainly open to any offered. Thank-you Bonny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Bonny, Sorry to hear how difficult a time you are having. It might be beneficial to let the list know what metropolitan area you are from. Perhaps there are list members in your area that could point you to a ped. rheumy. Keep us posted. Bob > Hello everybody, > I am the mother of a 3 year old daughter who has been diagnose since > the age of 2, however it took us 1 year to get his diagnosis... > My daughter sami, is having nothing but problems....she is effected > in every joint from her neck to her toes. We are having problems even > finding treatment for her, due to our insurance. Her last dr. treated > her as if she was an adult...gave her far too many meds and had never > treated children under the age of 10 before. Because we cant find a > rheumatologist to take her(due to her age), our family dr. dropped > her as a patient. We were accused of not taking it seriously enough. > Every corner i turn...i hit a brick wall...She is always in > pain...can hardly walk...how can i not take that seriously??? > I am pleased to have come accross this site...i dont have any kind of > a support group. I would love to speak with anybody who understands > what we are going through. I dont have much advise to give yet....but > i am certainly open to any offered. Thank-you Bonny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Bonnie, I think we all can sympathise with you in some way. Please know that we are here and so understand. I have had considerable trouble with insurance companies and Dr's. It has about driven us over the edge several times. I would recommend that you first check the net sources for rheumatologists in your area, understanding that though they might treat pediatrics, you will have to settle for someone not " board certified " . This is ok for starters. Next, if you can not get help for your child and the medical or insurance community will not cooperate, then consider drastic measures such as a community activist news station program. When all else fails, plea to the world. For now, look and learn. My son Skyler spent some time unable to walk or even sit up - the pain was in every joint from neck to toes and we had several other related problems too. This is like a rollercoaster ride and is filled with heartache. But most children make it through fairly well - sometimes better than the parents who care for them. Keep your spirits up and God Bless. [ & Skyler] new to the group.... Hello everybody, I am the mother of a 3 year old daughter who has been diagnose since the age of 2, however it took us 1 year to get his diagnosis... My daughter sami, is having nothing but problems....she is effected in every joint from her neck to her toes. We are having problems even finding treatment for her, due to our insurance. Her last dr. treated her as if she was an adult...gave her far too many meds and had never treated children under the age of 10 before. Because we cant find a rheumatologist to take her(due to her age), our family dr. dropped her as a patient. We were accused of not taking it seriously enough. Every corner i turn...i hit a brick wall...She is always in pain...can hardly walk...how can i not take that seriously??? I am pleased to have come accross this site...i dont have any kind of a support group. I would love to speak with anybody who understands what we are going through. I dont have much advise to give yet....but i am certainly open to any offered. Thank-you Bonny eGroups Sponsor For links to websites with JRA info please visit: http://www.geocities.com/Heartland/Village/8414/Links.html To manage your subscription settings, visit: subscribe/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 david, thank-you so much for your letter...i was begining to think that i was the only one who couldnt get a grip on this whole thing...although im sorry to hear that you have had to struggle to get help for your son...its nice to know that im not the only one. board certified or not...i will take what i can get to ease my daughters pain...Im not having any luck at all in finding someone..... God Bless you and your son as well bonny >From: " V. " <chivalry@...> >Reply- egroups >< egroups> >Subject: Re: new to the group.... >Date: Fri, 5 Jan 2001 15:29:09 -0700 > >Bonnie, > >I think we all can sympathise with you in some way. Please know that we >are here and so understand. I have had considerable trouble with insurance >companies and Dr's. It has about driven us over the edge several times. >I would recommend that you first check the net sources for rheumatologists >in your area, understanding that though they might treat pediatrics, you >will have to settle for someone not " board certified " . This is ok for >starters. >Next, if you can not get help for your child and the medical or insurance >community will not cooperate, then consider drastic measures such as a >community activist news station program. When all else fails, plea to the >world. >For now, look and learn. My son Skyler spent some time unable to walk or >even sit up - the pain was in every joint from neck to toes and we had >several other related problems too. This is like a rollercoaster ride and >is filled with heartache. But most children make it through fairly well - >sometimes better than the parents who care for them. > >Keep your spirits up and God Bless. > > [ & Skyler] > new to the group.... > > > Hello everybody, > I am the mother of a 3 year old daughter who has been diagnose since > the age of 2, however it took us 1 year to get his diagnosis... > My daughter sami, is having nothing but problems....she is effected > in every joint from her neck to her toes. We are having problems even > finding treatment for her, due to our insurance. Her last dr. treated > her as if she was an adult...gave her far too many meds and had never > treated children under the age of 10 before. Because we cant find a > rheumatologist to take her(due to her age), our family dr. dropped > her as a patient. We were accused of not taking it seriously enough. > Every corner i turn...i hit a brick wall...She is always in > pain...can hardly walk...how can i not take that seriously??? > I am pleased to have come accross this site...i dont have any kind of > a support group. I would love to speak with anybody who understands > what we are going through. I dont have much advise to give yet....but > i am certainly open to any offered. Thank-you Bonny > > > eGroups Sponsor > > > For links to websites with JRA info please visit: > http://www.geocities.com/Heartland/Village/8414/Links.html > > To manage your subscription settings, visit: > subscribe/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2001 Report Share Posted January 6, 2001 Bonny where do you live? the group is from all around and will give you good advice i am in Atlanta Ga melissa is 13 years old and has poly JRA ask any questions Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2001 Report Share Posted January 7, 2001 Bonnie, ....heck, whats a supprot group for? ;-) PS you might look into the Shriners organization near you. Re: new to the group.... david, thank-you so much for your letter...i was begining to think that i was the only one who couldnt get a grip on this whole thing...although im sorry to hear that you have had to struggle to get help for your son...its nice to know that im not the only one. board certified ..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 This is going to be a rambling response just dumping what comes to mind as I reread your post. The steroid shots helping and then wearing off might indicate an inflammatory process like Rheumatois Arthritis or Lupus. With the rash I think a specialist would have to decide whether Psoriatic Arthritis might also be a posibility. Thee are over 170 different types of inflammatory arthritis with a lot of symptoms in common and some different symptoms for each kind so it takes a specialist, and often a long time, to get a definitive diagnosis. Fortunately many of them are treated similarly and it is important to get on an aggessive treatment early to see if it works. For all of them treatment is trial and error because what works for one may not work for another. Also some people react to any of the medicines so it is common to start at a low level and work up gradually. Prednisone is a corticosteroid that is a strong anti-inflammatory and is often given early in the treatment of any inflammatory arthritis partly as a diagnostic aid and mostly to get quick relief while the slower-acting RA drugs take effect. Prednisone does not stop the progressive joint damage but does give relief from the symptoms. It also has some bad side effects so it should not be used any longer than it is needed for you to be able to function. You said, "All of my tests were normal, except my rheumatoid levels..he said they were elevated. What does this mean? He also said he was going to make the appt with a Rheumatologist, so I could have an ANA done, because he was not convinced by the blood test for lupus that he had done. What does all this mean?" An elevated rheumatoid level probably means a Rheumatoid Factor outside the normal range. It is one of the tests for RA but it does not prove either for or against having RA. Another test (I think it might be anti-CCP) is used for RA and a positive value is a very strong indication of RA but a negative value means nothing. I don't have Lupus but the only test I have heard of as being used for Lupus is the ANA and any doctor can order that test. I don't see why it takes a rheumatologist to order it. We've had recent posts about what caused RA and most people feel that it was triggered by some stress - physical such as illness or emotional such as loss of a loved one. Whatever was in that building to cause your rash could have been the trigger to bring out latent inflammatory arthritis. Probably any autoimmune disease can be triggered in a similar way and may not show up strongly for several months after the stressful event. Another thing to have checked (if it hasn't been done already) is the thyroid-specific hormone (TSH) because some thyroid problems look a lot like inflammatory arthritis. The good thing is that medications are pretty reliable in controlling TSH. On this topic I recommend that you always get a copy of your lab results so you can understand what is outside of normal limits and keep track of things to see if they are getting worse or better. Your doctors do look at the results but may not notice all details. They may look at only a few key items but you can ask about any of the others. God bless. ----- Original Message ----- From: mizzcrabbyazz Rheumatoid Arthritis Sent: Thursday, June 24, 2004 11:45 PM Subject: New to the group.... Hello, and thank you for having this group!My name is Carla, and I am 34 yrs young, and have a few questions, and really hope someone can explain to me what the issues mean that I have questions to...ok here we go..(might get lengthly)About 9 months ago I developed a very bad itchy rash on my back, and went to the dr, and was treated with steroid shots, and told it was a stress rash. The itching went away, but the rash was still there, and later the itching came back. Well I tried to deal with it, using amlactin, and what not on it. Then, about 1 month ago I developed a very bad raised red, very itchy rash on my arms, neck, and one spot on my nose, and 2 spots under my left eye. My joints are aching so very bad, my wrists, fingers, ankles, back, and shoulders. My fingers are a bit swollen, and hurt/ache to bend them, but I can bend them. I am extremely stiff in the mornings, after 1/2 hr, I seem to be fine til I sit here at the computer, or sit to watch tv..then it all stiffens up again...always aches though. I am nausiated most all of the time also. I went to the dr, and she asked me to see a dermatologist...I did. The dermatologist looked at my rash, and told me it was lupus. He asked me a series of questions, and that even more confirmed it for him. He wanted me to see an Internal Medicine Dr. I did. The blood tests were taken, and I had been having lots of heartburn and such, so he wanted to see about my gallbladder (ultrasound) When I left his office, he told me he believed it was lupus. I had to call my derm, to get the biopsy results..he said it was positive. He started me on plaquenil 200 mg. I had to see the Internal Medicine Dr today for my results of blood tests. All of my tests were normal, except my rheumatoid levels..he said they were elevated. What does this mean? He also said he was going to make the appt with a Rheumatologist, so I could have an ANA done, because he was not convinced by the blood test for lupus that he had done. What does all this mean? I was trying to just absorb what he was saying, and it was 5:30 pm, and I was not feeling well, and was tired, and he asked me to call him on monday because he wants me to see the rheumy on either mon or tues...this seems to be very urgent to get me in that quick? Can someone tell me what they think? I know I will find out mon or tues, but I am very curious about all this?Also...does anyone think there could be a connection between me being in a building about 2 yrs ago, and developing a terrible itchy raised rash, on my arms, and neck...only after being in the building for about 45 min, then it would go away about 45 min after being out of the building...but this daily situation led to anaphalatic shock ( I was routinely in the building 5-6 days per week for 4 months)I was sent to an emergency clinic for epi, and later that week I was sent to an allergist...was given allegra, singular, serevent, albutural, and zyrtec, and went back to the building after being on meds for several days. The rash came through all those meds! I carried an epi pen for that emergency, which did not happen again Thank Goodness! But the rash remained til the day I left there and never went back...or so I thought. I did not connect it, I would occasionly get this rash on my neck, when I would be outside, or just get hot...I wonder if there is a connection?? Anybody??I am very happy I found this group...BlessingsCarla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 Carla, I would surely think there is a connection with the building and your rash. I was hit so fast with RA that folks all asked me what I had been exposed to lately such as paint or change in building where I worked. We never could figure it out. Wonder if that building was full of mold??!! Good luck and God bless, Kay ----- Original Message ----- From: " mizzcrabbyazz " <mizzcrabbyazz@...> <Rheumatoid Arthritis > Sent: Friday, June 25, 2004 1:45 AM Subject: New to the group.... > Hello, and thank you for having this group! > > My name is Carla, and I am 34 yrs young, and have a few questions, > and really hope someone can explain to me what the issues mean that > I have questions to...ok here we go..(might get lengthly) > > About 9 months ago I developed a very bad itchy rash on my back, and > went to the dr, and was treated with steroid shots, and told it was > a stress rash. The itching went away, but the rash was still there, > and later the itching came back. Well I tried to deal with it, using > amlactin, and what not on it. Then, about 1 month ago I developed a > very bad raised red, very itchy rash on my arms, neck, and one spot > on my nose, and 2 spots under my left eye. My joints are aching so > very bad, my wrists, fingers, ankles, back, and shoulders. My > fingers are a bit swollen, and hurt/ache to bend them, but I can > bend them. I am extremely stiff in the mornings, after 1/2 hr, I > seem to be fine til I sit here at the computer, or sit to watch > tv..then it all stiffens up again...always aches though. I am > nausiated most all of the time also. I went to the dr, and she > asked me to see a dermatologist...I did. The dermatologist looked > at my rash, and told me it was lupus. He asked me a series of > questions, and that even more confirmed it for him. He wanted me to > see an Internal Medicine Dr. I did. The blood tests were taken, > and I had been having lots of heartburn and such, so he wanted to > see about my gallbladder (ultrasound) When I left his office, he > told me he believed it was lupus. I had to call my derm, to get the > biopsy results..he said it was positive. He started me on plaquenil > 200 mg. I had to see the Internal Medicine Dr today for my results > of blood tests. All of my tests were normal, except my rheumatoid > levels..he said they were elevated. What does this mean? He also > said he was going to make the appt with a Rheumatologist, so I could > have an ANA done, because he was not convinced by the blood test for > lupus that he had done. What does all this mean? I was trying to > just absorb what he was saying, and it was 5:30 pm, and I was not > feeling well, and was tired, and he asked me to call him on monday > because he wants me to see the rheumy on either mon or tues...this > seems to be very urgent to get me in that quick? Can someone tell > me what they think? I know I will find out mon or tues, but I am > very curious about all this? > > Also...does anyone think there could be a connection between me > being in a building about 2 yrs ago, and developing a terrible itchy > raised rash, on my arms, and neck...only after being in the building > for about 45 min, then it would go away about 45 min after being out > of the building...but this daily situation led to anaphalatic shock > ( I was routinely in the building 5-6 days per week for 4 months) > I was sent to an emergency clinic for epi, and later that week I was > sent to an allergist...was given allegra, singular, serevent, > albutural, and zyrtec, and went back to the building after being on > meds for several days. The rash came through all those meds! I > carried an epi pen for that emergency, which did not happen again > Thank Goodness! But the rash remained til the day I left there and > never went back...or so I thought. I did not connect it, I would > occasionly get this rash on my neck, when I would be outside, or > just get hot...I wonder if there is a connection?? Anybody?? > > I am very happy I found this group... > Blessings > Carla > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 Hi Harold, I very much enjoyed reading your reply to me...I would almost think you were a Dr. and that is a compliment! I am not sure why my dr is having the rheumy do the ANA...all I do know is that he said that the rheumy will be more thorough than he, and he will also do an ANA. I have no idea what has caused my paticular situation, but I am willing to bet that the building has something very significant to do with it. I never had problems prior to that. That building was a mess anyhow, when it rained, the toliets would overflow, and would go into the halls..(this was a nursing center for the elderly) The basement would flood too. I have no idea, but I would guess there was mold there. He did also say my sed rate was 12...is that good? I am not sure if it is the same as you are talking about, but he did tell me my thyroid test was just fine. I am all new to all this pain..this much at once anyhow...and what really hurts, is sitting at a stoplight in my sportage..(it is a 5spd) and holding the clutch and brake, waiting for that darn green light. My dr did prescribe me 5mg prednisone. I think it needs increased though. Anyway I need to go for a bit, you have a great evening... Carla Quote Link to comment Share on other sites More sharing options...
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