Guest guest Posted November 29, 2004 Report Share Posted November 29, 2004 Sorry everyone, I thought I sent this to Marilyn off-line. I am sure you are just fascinated by health history!! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2004 Report Share Posted November 29, 2004 Actually, I am fascinated. I'm glad you accidentally shared with us all. DJ, my husband, had some joint pain for several months last year. When he finally went to a dr about a weird rash he's had for nearly 2 years, one thing she mentioned was a possible link with RA. He's not been to a rheumologist cuz the pain is gone. Plus-- he's a typical male in the dr dept-- just won't go unless he's convinced something is serious. A rash is not an issue -- nor is joint pain that has gone away. So... we'll see what comes of it. Michele W pam.ryan@... wrote: > Sorry everyone, > I thought I sent this to Marilyn off-line. I am sure you are just > fascinated by health history!! > pam > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2004 Report Share Posted November 29, 2004 This is all very interesting and I am glad the topic was brought up. Looks like I will be contacting an orthopedic Dr. today and talking about this. Patty's back hurts tons and so do her knees, ankles and shoulders. Sometimes she can't sleep well because of pain. She has osteopenia and is hypoflexable in many muscles. Now I want to look at the joints too. Her ankle was so swollen the other day. Thanks for this topic. I for one will be proactive about it just to make sure. Bonnie, Mom to Krisitna 22, Patty CHARGE 20 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 Bonnie: The Rheumatologist said is also hyperflexible. He said this can cause joint or arthritis problems when an individual reaches the age of 50+. can take her thumb all the way backwards or forward and touch her wrist; itdoesn't matter which way she takes it. I remember when she started sucking her thumb, it always looked like it was out of joint because it would be angled to her hand strangely: Her palm would be facing out, but her thumb was like it was sticking straight out backwards. I also remember a PT going nuts once when she visited. She ended up placing a " doughnut " on 's right leg/hip for a week because she felt had subluxed (dislocated) her hip. wasn't even scooting at this point so we hadn't really noticed it, and hadn't complained at all. After that one week, nothing more ever came of it. Have to wonder if that was an early " warning " . I'd say it is probably a good idea to have Patty tested for arthritis. I know that having reached treatment for has made a great difference in her attitude/behaviors. Not to mention she is just much more comfortable all around. Friends in CHARGE, Marilyn Ogan Mom of Ken (15 yrs., ADD) and (12 yrs., CHARGE+) Wife of Rick oganm@... oganr@... Re: RE: RA This is all very interesting and I am glad the topic was brought up. Looks like I will be contacting an orthopedic Dr. today and talking about this. Patty's back hurts tons and so do her knees, ankles and shoulders. Sometimes she can't sleep well because of pain. She has osteopenia and is hypoflexable in many muscles. Now I want to look at the joints too. Her ankle was so swollen the other day. Thanks for this topic. I for one will be proactive about it just to make sure. Bonnie, Mom to Krisitna 22, Patty CHARGE 20 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 One thing our family doctor noted was that sometimes there is a virus (or numerous viruses) that can effect joints like arthritis does. It can take months or even years to work through it, but it will just go away on it's own. In fact, the doctor said 's symptoms might resolve on their own by the time our rheumatology appointment rolled around. I could wish! However, at least now we know what the prbolem is and what to do about it. Friends in CHARGE, Marilyn Ogan Mom of Ken (15 yrs., ADD) and (12 yrs., CHARGE+) Wife of Rick oganm@... oganr@... Re: RE: RA Actually, I am fascinated. I'm glad you accidentally shared with us all. DJ, my husband, had some joint pain for several months last year. When he finally went to a dr about a weird rash he's had for nearly 2 years, one thing she mentioned was a possible link with RA. He's not been to a rheumologist cuz the pain is gone. Plus-- he's a typical male in the dr dept-- just won't go unless he's convinced something is serious. A rash is not an issue -- nor is joint pain that has gone away. So... we'll see what comes of it. Michele W pam.ryan@... wrote: > Sorry everyone, > I thought I sent this to Marilyn off-line. I am sure you are just > fascinated by health history!! > pam > > 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...
Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 Just a note that Aubrie is this hyperflexible as well -- in nearly her entire body. Her thumb, fingers, elbows, shoulders, hips, knees, ankles... it contributed to her hip deterioration and is likely to cause arthritic pain eventually. I hope it doesn't become painful early in life, but I also wonder if she'll know when it hurts since she has such a weird sensation of pain. Michele W Aubrie's mom 7 yrs Rick Ogan wrote: > Bonnie: > The Rheumatologist said is also hyperflexible. He said this can > cause joint or arthritis problems when an individual reaches the age > of 50+. > can take her thumb all the way backwards or forward and touch her > wrist; itdoesn't matter which way she takes it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 Marilyn, Thanks. I made an appointment with an Orthopedic doctor for Patty today. Bonnie Quote Link to comment Share on other sites More sharing options...
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