Guest guest Posted June 29, 2004 Report Share Posted June 29, 2004 Hi Marilyn I can sympathise with Kristan with undiagnosable joint pains. From very young I had problems with my knees - long car journeys and they would fill with fluid and be painful. The pains have continued until today (I am now in my early forties). On many occasions I had my knees checked for RA (there is a history in my family), injuries or potentially serious health problems etc and no one has come up with an answer. For a considerable number of years I kept the pain under control when it occurred with prescription painkillers - alcohol also worked. Certain forms of exercise were a complete nono. There was however no lack of strength in the knee joints. These days providing I train at karate I contain these problems (I am writing though with a knee tendon/ligament problem!) although in the early days - many years ago - due to incorrect technique I had regular pain. There are still certain physical things I avoid such as cycling and no one yet has worked out my problem. I have given up trying to find out what it is. Simon > >Reply-To: CHARGE >To: <CHARGE > >Subject: RE: Re: The World According to Westmaas... >Date: Mon, 28 Jun 2004 23:34:33 -0500 > >Michele: >We'll just miss you at Shriner's if you are going to Chicago. We have >another appointment July 20. We see the Rheumatologist again; and then we >also see the Orthopedic doc for the scholiosis. > >We went to the Rheumatologist last week on Tuesday. He did an exam and >said >that all of 's joints appear to be " mechanically sound " , meaning no >malformations were evident to indicate why she is having this migratory >joint pain. He did blood draws to check for several things besides >rheumatoid arthritis. Among them are Lyme's Disease, Lupus, staph >infection, and 2 others I think. He said if it were Lyme's, it would be a > " quick fix " as it would mean antibiotics for a month, then we'd be done. >(Said it can be dormant for as much as a year, and went to camp 2 >times last Summer.) > >He asked about family history of RA and also about psoriasis. He said both >are indicators of familial probability of RA. Rick's sister has psoriasis, >and an aunt has RA. Just got a note from my mom saying that her doc thinks >she may have RA. With all that, I'm afraid we may be looking at Juvenile >Rheumatoid Arthritis for . Anyone have any experience with this? >I'm hoping some of the new joint meds on the market are appropriate for >children. We'd been giving 2 tsp. ibuprofen twice a day for pain when > asks. The doctor said she can have as much as 3 tsp., 3 times a >day >(as long as it is not for fever remedy). Fortunately, this has done a lot >to alleviate much of 's pains. > >Shriner's was really nice. I wasn't sure what to expect from the website >photo. (Looked like a tiny, old building!) The facility is really wuite >large, very kid-friendly and good for families. made a new > " boyfriend " while playing Super in a waiting room! (And, yes, he was >really, really cute! says so!! I think I'm in trouble here >already!!!) Worst part was we drove ourselves. Getting there was easy. >But we got stuck in traffic leaving town --wall to wall trucks! - and I >missed a left handed exit. Took us 6 hours to get back to Indianapolis: >It's a 3-hour trip. I think I'll be calling the local chapter for a ride >in >July! > >Friends in CHARGE, >Marilyn Ogan >Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) >Wife of Rick >oganm@... >oganr@... > Re: The World According to Westmaas... > > > Aubrie's pre-op appt is Fri. Her surgery is July 22. > > Michele W > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 Marilyn Sorry for the delay in replying but Flo, I and the girls have been away for a week - and I have been a bit daunted by the 300 plus emails I have to wade through. Car journeys were a real problem when I was young and it didn't matter what space I had. These days I do the driving on on long journeys so sitting about doesn't happen. Mind you, a friend and were travelling long distance to a football match (you call it soccer!) and had had a long slow journey that was spotted by an occupant of the pub we walked into for a drink -something to do with our body shape!. My problem is specifically knees. The last time I was tested for arthritis it was by xray since the damage caused by arthritis is visible on xray, I also had blood tests for a variety of illnesses/diseases including Leukaemia. I know that this problem is not arthritic because I have arthritis in one of my big toes and its main joint but this has been caused by numerous injuries (there is a history of arthiritis in my family though). Regarding cycling, my main problem is hills - although I was a strong cyclist the pressure on my knees riding up a very steep hill or after 6 or so miles would be too much (I can't cycle slowly!). This was the same with weight training - exercises such as squats were out of the question. Yes swimming is a good exercise for keeping pressure off of joints but I find it boring. I need to to keep up muscle strength in my legs otherwise the knee pains return. Karate somehow for me is right but for many people it screws their knees. As I think I said before I have given up on trying to find a diagnosis and now just manage 'the problem'. When I was younger it did bother me alot but didn't prevent me from being active but that I think was just down to being a child (and now because I also have a chronic back problem I am used to daily pain of a certain level). I appreciate that this is not the most illuminating of responses but sometimes there are no answers. Regards Simon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 Marilyn Sorry for the delay in replying but Flo, I and the girls have been away for a week - and I have been a bit daunted by the 300 plus emails I have to wade through. Car journeys were a real problem when I was young and it didn't matter what space I had. These days I do the driving on on long journeys so sitting about doesn't happen. Mind you, a friend and were travelling long distance to a football match (you call it soccer!) and had had a long slow journey that was spotted by an occupant of the pub we walked into for a drink -something to do with our body shape!. My problem is specifically knees. The last time I was tested for arthritis it was by xray since the damage caused by arthritis is visible on xray, I also had blood tests for a variety of illnesses/diseases including Leukaemia. I know that this problem is not arthritic because I have arthritis in one of my big toes and its main joint but this has been caused by numerous injuries (there is a history of arthiritis in my family though). Regarding cycling, my main problem is hills - although I was a strong cyclist the pressure on my knees riding up a very steep hill or after 6 or so miles would be too much (I can't cycle slowly!). This was the same with weight training - exercises such as squats were out of the question. Yes swimming is a good exercise for keeping pressure off of joints but I find it boring. I need to to keep up muscle strength in my legs otherwise the knee pains return. Karate somehow for me is right but for many people it screws their knees. As I think I said before I have given up on trying to find a diagnosis and now just manage 'the problem'. When I was younger it did bother me alot but didn't prevent me from being active but that I think was just down to being a child (and now because I also have a chronic back problem I am used to daily pain of a certain level). I appreciate that this is not the most illuminating of responses but sometimes there are no answers. Regards Simon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2004 Report Share Posted July 12, 2004 Simon: Thanks for your response. Never too late to reply! I guess I sort of hope they come to a diagnosis so we have a better idea of how to treat it. But I also understand that we may never know. I just got back from taking to Deaf Camp 3 hours away. We stopped twice and she still had a hard time getting out of the car when we arrived. (I did too!) We are driving to Florida at the end of July - Orlando for Disney World, and on to Miami for a CHARGE Board meeting Rick has. That is going to be a llloooooonnnnnggggg drive. Going down we'll do it in 2 days. Coming back we are driving clear through from Miami. At least that is the plan - I have a feeling we may take 2 coming back! Friends in CHARGE, Marilyn Ogan Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) Wife of Rick oganm@... oganr@... RE: s Joints Marilyn Sorry for the delay in replying but Flo, I and the girls have been away for a week - and I have been a bit daunted by the 300 plus emails I have to wade through. Car journeys were a real problem when I was young and it didn't matter what space I had. These days I do the driving on on long journeys so sitting about doesn't happen. Mind you, a friend and were travelling long distance to a football match (you call it soccer!) and had had a long slow journey that was spotted by an occupant of the pub we walked into for a drink -something to do with our body shape!. My problem is specifically knees. The last time I was tested for arthritis it was by xray since the damage caused by arthritis is visible on xray, I also had blood tests for a variety of illnesses/diseases including Leukaemia. I know that this problem is not arthritic because I have arthritis in one of my big toes and its main joint but this has been caused by numerous injuries (there is a history of arthiritis in my family though). Regarding cycling, my main problem is hills - although I was a strong cyclist the pressure on my knees riding up a very steep hill or after 6 or so miles would be too much (I can't cycle slowly!). This was the same with weight training - exercises such as squats were out of the question. Yes swimming is a good exercise for keeping pressure off of joints but I find it boring. I need to to keep up muscle strength in my legs otherwise the knee pains return. Karate somehow for me is right but for many people it screws their knees. As I think I said before I have given up on trying to find a diagnosis and now just manage 'the problem'. When I was younger it did bother me alot but didn't prevent me from being active but that I think was just down to being a child (and now because I also have a chronic back problem I am used to daily pain of a certain level). I appreciate that this is not the most illuminating of responses but sometimes there are no answers. Regards Simon Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
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