Guest guest Posted December 27, 2008 Report Share Posted December 27, 2008 Urgh so Nick has EDS too... you know his skin kinda has that stretchy look even in the pictures! I was watching Mystery Diagnosis and they had a case of a woman with EDS. They didnt diagnose her for many years. Doctorts had done several surguries on her to tighten her tendons, etc back up because they had become so loosened up... no one had ever thought.... wow this is... ODD...... but eventually they did...... She is a major part of a support organization for EDS.. can't remeber which one and even showed her cool ring splints off she uses to help her hypermobility issues.... I thought it was a good educational part and interesting how she presented... all of the issues she had.surgeries and things before anyone had every realized she actually had a disease.... Issadora On Fri, Dec 26, 2008 at 9:23 PM, Georgina <gmckin11@...> wrote: > Thanks for checking in, Helen. You and Nick have been in our thoughts. > So sorry to hear about your co-worker. These are trying times for so many. > Please stay strong. > > Much Aloha, > Georgina > > RE: Check In , Helen, Alia, Rusty, Tree, > > Hi all and a merry Christmas to all, > > I am sorry I have been absent for awhile. life can sometimes be a stuggle > and in these days and times it hits everyone. > > We lost my father in law to Cancer in Sept, was Dx with Elhers > danlos Symdrome was well as his Systemic JRA > > I had surgery, a shoulder decompression as I have a partial tear in my > rotator cuff in October and was laid up for awhile. I have been going to PT > since the summer, my fibromyalgia is doing well, but my shoulder will need > more intensive surgery in the new year. > > Dan got laid off in Nov, so the medical nightmare with Nicks remicade > continues. We are on cobra right now and will switch to my company's high > deductable plan in Jan, so I need to find $6000 deductable, sigh. > > last week a close work buddy, left the office one morning and said he would > be right back, went home and committed suicide. he has been with the company > 30+ years so it was a complete shock to all. We had a grief counciller in at > work last friday and yesterday was his service. TOO TOO sad. > > On to the good news, nick is doing well and come the new year we are going > to try and go 6 weeks between remicade infussions, cross your fingers will > ya. > > And my son nows in the navy is home on leave for the holidays, so its nice > to be surrounded by loved ones. > > Well thats about us in a nutshell, my shoulder is worthless so typing is > never easy, so i try to aviod it where possible. > > hugs and kisses to all our friends out there, sorry i have been such a > slacker lately. Ill try and do better in the new year )) > > hugs Helen and nicholas ( 11, systemic JRA and Elhers danlos Syndrome, > classical type) > > __________________________________________________________ > Life on your PC is safer, easier, and more enjoyable with Windows Vista®. > http://clk.atdmt.com/MRT/go/127032870/direct/01/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2008 Report Share Posted December 27, 2008 The woman on that episode is from Wisconsin. I have talked with her numerous times about Hannah. She strongly feels Hannah may have EDS, but getting Hannah into a genetics person has not been easy. Lynne is a wonderful lady and very active the EDS community. I found her through the mom of one of Hannah's friends. Hannah's friend has a sister with EDS. Very, very bad skin involvement, just the tiniest cut usually results in her needing stitches. Wish I was home the night that was on. I missed it. Sending prayers & happy thoughts, Beth ________________________________ From: Issadora <FlyfreeIzzie@...> Sent: Saturday, December 27, 2008 3:26:44 AM Subject: Re: EDS Urgh so Nick has EDS too... you know his skin kinda has that stretchy look even in the pictures! I was watching Mystery Diagnosis and they had a case of a woman with EDS. They didnt diagnose her for many years. Doctorts had done several surguries on her to tighten her tendons, etc back up because they had become so loosened up... no one had ever thought.... wow this is... ODD...... but eventually they did...... She is a major part of a support organization for EDS.. can't remeber which one and even showed her cool ring splints off she uses to help her hypermobility issues.... I thought it was a good educational part and interesting how she presented... all of the issues she had.surgeries and things before anyone had every realized she actually had a disease.... Issadora On Fri, Dec 26, 2008 at 9:23 PM, Georgina <gmckin11@hawaiiante l.net> wrote: > Thanks for checking in, Helen. You and Nick have been in our thoughts. > So sorry to hear about your co-worker. These are trying times for so many. > Please stay strong. > > Much Aloha, > Georgina > > RE: Check In , Helen, Alia, Rusty, Tree, > > Hi all and a merry Christmas to all, > > I am sorry I have been absent for awhile. life can sometimes be a stuggle > and in these days and times it hits everyone. > > We lost my father in law to Cancer in Sept, was Dx with Elhers > danlos Symdrome was well as his Systemic JRA > > I had surgery, a shoulder decompression as I have a partial tear in my > rotator cuff in October and was laid up for awhile. I have been going to PT > since the summer, my fibromyalgia is doing well, but my shoulder will need > more intensive surgery in the new year. > > Dan got laid off in Nov, so the medical nightmare with Nicks remicade > continues. We are on cobra right now and will switch to my company's high > deductable plan in Jan, so I need to find $6000 deductable, sigh. > > last week a close work buddy, left the office one morning and said he would > be right back, went home and committed suicide. he has been with the company > 30+ years so it was a complete shock to all. We had a grief counciller in at > work last friday and yesterday was his service. TOO TOO sad. > > On to the good news, nick is doing well and come the new year we are going > to try and go 6 weeks between remicade infussions, cross your fingers will > ya. > > And my son nows in the navy is home on leave for the holidays, so its nice > to be surrounded by loved ones. > > Well thats about us in a nutshell, my shoulder is worthless so typing is > never easy, so i try to aviod it where possible. > > hugs and kisses to all our friends out there, sorry i have been such a > slacker lately. Ill try and do better in the new year )) > > hugs Helen and nicholas ( 11, systemic JRA and Elhers danlos Syndrome, > classical type) > > ____________ _________ _________ _________ _________ _________ _ > Life on your PC is safer, easier, and more enjoyable with Windows Vista®. > http://clk.atdmt. com/MRT/go/ 127032870/ direct/01/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 It will likely be on again .... just have to figure out the episode....THey ussualy repeat these things repeatedly... lol... I can't recall the episode description but I bet you can email her about it Thats too bad it is sooo hard to get Hannah in to see a geneticist! I know some Rhumaologist should be able to figure out EDS but doesnt seem Hannah has had much fortune in that area The episode was very good. There is a young lady on my facebook with EDS... she has a lot of pain issues too. She is using a power wheelchair a great deal of the time unfortunately. But I believe hs ehas multiple diagnosis too... (of course).... I glad the knee braces are helping her at this time. I wish i could get some of those fancy ring splints for my hypermobile thumbs that are issued cause of the tenosynovitis/tendon inflammation issues..... sigh.... anyways... tc Issadora On Sat, Dec 27, 2008 at 7:05 AM, Beth Yohnk <yohnkmom@...> wrote: > The woman on that episode is from Wisconsin. I have talked with her > numerous times about Hannah. She strongly feels Hannah may have EDS, but > getting Hannah into a genetics person has not been easy. Lynne is a > wonderful lady and very active the EDS community. I found her through the > mom of one of Hannah's friends. Hannah's friend has a sister with EDS. > Very, very bad skin involvement, just the tiniest cut usually results in her > needing stitches. > > Wish I was home the night that was on. I missed it. > > Sending prayers & happy thoughts, > Beth > > ________________________________ > From: Issadora <FlyfreeIzzie@... <FlyfreeIzzie%40gmail.com>> > < %40> > Sent: Saturday, December 27, 2008 3:26:44 AM > Subject: Re: EDS > > Urgh so Nick has EDS too... you know his skin kinda has that stretchy look > even in the pictures! > > I was watching Mystery Diagnosis and they had a case of a woman with EDS. > They didnt diagnose her for many years. Doctorts had done several surguries > on her to tighten her tendons, etc back up because they had become so > loosened up... no one had ever thought.... wow this is... ODD...... but > eventually they did...... > > She is a major part of a support organization for EDS.. can't remeber which > one and even showed her cool ring splints off she uses to help her > hypermobility issues.... > > I thought it was a good educational part and interesting how she > presented... all of the issues she had.surgeries and things before anyone > had every realized she actually had a disease.... > > Issadora > > On Fri, Dec 26, 2008 at 9:23 PM, Georgina <gmckin11@hawaiiante l.net> > wrote: > > > Thanks for checking in, Helen. You and Nick have been in our thoughts. > > So sorry to hear about your co-worker. These are trying times for so > many. > > Please stay strong. > > > > Much Aloha, > > Georgina > > > > RE: Check In , Helen, Alia, Rusty, Tree, > > > > Hi all and a merry Christmas to all, > > > > I am sorry I have been absent for awhile. life can sometimes be a stuggle > > and in these days and times it hits everyone. > > > > We lost my father in law to Cancer in Sept, was Dx with Elhers > > danlos Symdrome was well as his Systemic JRA > > > > I had surgery, a shoulder decompression as I have a partial tear in my > > rotator cuff in October and was laid up for awhile. I have been going to > PT > > since the summer, my fibromyalgia is doing well, but my shoulder will > need > > more intensive surgery in the new year. > > > > Dan got laid off in Nov, so the medical nightmare with Nicks remicade > > continues. We are on cobra right now and will switch to my company's high > > deductable plan in Jan, so I need to find $6000 deductable, sigh. > > > > last week a close work buddy, left the office one morning and said he > would > > be right back, went home and committed suicide. he has been with the > company > > 30+ years so it was a complete shock to all. We had a grief counciller in > at > > work last friday and yesterday was his service. TOO TOO sad. > > > > On to the good news, nick is doing well and come the new year we are > going > > to try and go 6 weeks between remicade infussions, cross your fingers > will > > ya. > > > > And my son nows in the navy is home on leave for the holidays, so its > nice > > to be surrounded by loved ones. > > > > Well thats about us in a nutshell, my shoulder is worthless so typing is > > never easy, so i try to aviod it where possible. > > > > hugs and kisses to all our friends out there, sorry i have been such a > > slacker lately. Ill try and do better in the new year )) > > > > hugs Helen and nicholas ( 11, systemic JRA and Elhers danlos Syndrome, > > classical type) > > > > ____________ _________ _________ _________ _________ _________ _ > > Life on your PC is safer, easier, and more enjoyable with Windows > Vista®. > > http://clk.atdmt. com/MRT/go/ 127032870/ direct/01/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 I am just full of questions. Lucy's thumbs are hypermobile and they hurt her. Her rheumatologist says it's not due to the JRA and she's just flexible because she's young, but her thumb joints flex way in and out. The OT thought that this was damage caused by the JRA but the rheumy says no. Any thoughts? Amy Re: EDS > > Urgh so Nick has EDS too... you know his skin kinda has that stretchy look > even in the pictures! > > I was watching Mystery Diagnosis and they had a case of a woman with EDS. > They didnt diagnose her for many years. Doctorts had done several surguries > on her to tighten her tendons, etc back up because they had become so > loosened up... no one had ever thought.... wow this is... ODD...... but > eventually they did...... > > She is a major part of a support organization for EDS.. can't remeber which > one and even showed her cool ring splints off she uses to help her > hypermobility issues.... > > I thought it was a good educational part and interesting how she > presented... all of the issues she had.surgeries and things before anyone > had every realized she actually had a disease.... > > Issadora > > On Fri, Dec 26, 2008 at 9:23 PM, Georgina <gmckin11@hawaiiante l.net> > wrote: > > > Thanks for checking in, Helen. You and Nick have been in our thoughts. > > So sorry to hear about your co-worker. These are trying times for so > many. > > Please stay strong. > > > > Much Aloha, > > Georgina > > > > RE: Check In , Helen, Alia, Rusty, Tree, > > > > Hi all and a merry Christmas to all, > > > > I am sorry I have been absent for awhile. life can sometimes be a stuggle > > and in these days and times it hits everyone. > > > > We lost my father in law to Cancer in Sept, was Dx with Elhers > > danlos Symdrome was well as his Systemic JRA > > > > I had surgery, a shoulder decompression as I have a partial tear in my > > rotator cuff in October and was laid up for awhile. I have been going to > PT > > since the summer, my fibromyalgia is doing well, but my shoulder will > need > > more intensive surgery in the new year. > > > > Dan got laid off in Nov, so the medical nightmare with Nicks remicade > > continues. We are on cobra right now and will switch to my company's high > > deductable plan in Jan, so I need to find $6000 deductable, sigh. > > > > last week a close work buddy, left the office one morning and said he > would > > be right back, went home and committed suicide. he has been with the > company > > 30+ years so it was a complete shock to all. We had a grief counciller in > at > > work last friday and yesterday was his service. TOO TOO sad. > > > > On to the good news, nick is doing well and come the new year we are > going > > to try and go 6 weeks between remicade infussions, cross your fingers > will > > ya. > > > > And my son nows in the navy is home on leave for the holidays, so its > nice > > to be surrounded by loved ones. > > > > Well thats about us in a nutshell, my shoulder is worthless so typing is > > never easy, so i try to aviod it where possible. > > > > hugs and kisses to all our friends out there, sorry i have been such a > > slacker lately. Ill try and do better in the new year )) > > > > hugs Helen and nicholas ( 11, systemic JRA and Elhers danlos Syndrome, > > classical type) > > > > ____________ _________ _________ _________ _________ _________ _ > > Life on your PC is safer, easier, and more enjoyable with Windows > Vista®. > > http://clk.atdmt. com/MRT/go/ 127032870/ direct/01/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Being hypermobile is not from damage (at least that's the way it was explained to me). Usually when damage is occurring I believe you lose mobility. Being hypermoblie, means your joints are too loose. Hannah is hypermobile in every joint. She went through 6 mos of PT to help with this. Her knees are the worst and she wears special knee braces for activity. She sprains very easily and has to be careful due to the hypermobility. EDS is usually hypermobility in multiple joints and joint pain. You can do a search on EDS (Ehler's Danlos Syndrome) for more information. It is one of those diseases that is trickier to diagnose. However, the treatment is pretty much we are already doing for Hannah anyway. Hope that helps some. Beth & Hannah, 12, unspecified arthritis w/hypermobility; asthma; gerd; migraines & Vitamin D deficiency. Sending prayers & happy thoughts, Beth ________________________________ From: hendricksonhouseful <nuestrasenora@...> Sent: Sunday, December 28, 2008 11:41:50 AM Subject: RE: EDS I am just full of questions. Lucy's thumbs are hypermobile and they hurt her. Her rheumatologist says it's not due to the JRA and she's just flexible because she's young, but her thumb joints flex way in and out. The OT thought that this was damage caused by the JRA but the rheumy says no. Any thoughts? Amy Re: EDS > > Urgh so Nick has EDS too... you know his skin kinda has that stretchy look > even in the pictures! > > I was watching Mystery Diagnosis and they had a case of a woman with EDS. > They didnt diagnose her for many years. Doctorts had done several surguries > on her to tighten her tendons, etc back up because they had become so > loosened up... no one had ever thought.... wow this is... ODD...... but > eventually they did...... > > She is a major part of a support organization for EDS.. can't remeber which > one and even showed her cool ring splints off she uses to help her > hypermobility issues.... > > I thought it was a good educational part and interesting how she > presented... all of the issues she had.surgeries and things before anyone > had every realized she actually had a disease.... > > Issadora > > On Fri, Dec 26, 2008 at 9:23 PM, Georgina <gmckin11@hawaiiant e l.net> > wrote: > > > Thanks for checking in, Helen. You and Nick have been in our thoughts. > > So sorry to hear about your co-worker. These are trying times for so > many. > > Please stay strong. > > > > Much Aloha, > > Georgina > > > > RE: Check In , Helen, Alia, Rusty, Tree, > > > > Hi all and a merry Christmas to all, > > > > I am sorry I have been absent for awhile. life can sometimes be a stuggle > > and in these days and times it hits everyone. > > > > We lost my father in law to Cancer in Sept, was Dx with Elhers > > danlos Symdrome was well as his Systemic JRA > > > > I had surgery, a shoulder decompression as I have a partial tear in my > > rotator cuff in October and was laid up for awhile. I have been going to > PT > > since the summer, my fibromyalgia is doing well, but my shoulder will > need > > more intensive surgery in the new year. > > > > Dan got laid off in Nov, so the medical nightmare with Nicks remicade > > continues. We are on cobra right now and will switch to my company's high > > deductable plan in Jan, so I need to find $6000 deductable, sigh. > > > > last week a close work buddy, left the office one morning and said he > would > > be right back, went home and committed suicide. he has been with the > company > > 30+ years so it was a complete shock to all. We had a grief counciller in > at > > work last friday and yesterday was his service. TOO TOO sad. > > > > On to the good news, nick is doing well and come the new year we are > going > > to try and go 6 weeks between remicade infussions, cross your fingers > will > > ya. > > > > And my son nows in the navy is home on leave for the holidays, so its > nice > > to be surrounded by loved ones. > > > > Well thats about us in a nutshell, my shoulder is worthless so typing is > > never easy, so i try to aviod it where possible. > > > > hugs and kisses to all our friends out there, sorry i have been such a > > slacker lately. Ill try and do better in the new year )) > > > > hugs Helen and nicholas ( 11, systemic JRA and Elhers danlos Syndrome, > > classical type) > > > > ____________ _________ _________ _________ _________ _________ _ > > Life on your PC is safer, easier, and more enjoyable with Windows > Vista®. > > http://clk.atdmt. com/MRT/go/ 127032870/ direct/01/ > > > > Quote Link to comment Share on other sites More sharing options...
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