Guest guest Posted April 11, 2002 Report Share Posted April 11, 2002 , Hello, and welcome! Yes, we are a direct descendant (the direct descendant, I believe) of TCS-AA. Please fill us in with all the changes that have happened since you left TCS-AA and join in the discussion. This list is just as nice to be on as TCS-AA. We certainly learned a lot about how to conduct ourselves from that list, and we have taken our cue from that. So, you won't find any negativity or nastiness here. Just lots of support and friendship. Unfortunately, the disorder just seems to progress sometimes. And yes, those worsening symptoms do sound eerily familiar. I can tell you, surgery is a tough call. I had it, and now, 4 years later, I'm back to where I was prior to surgery, dealing with the symptoms through medication. You might want to consider that before you go to anything more invasive. Just a thought! The bladder thing, not a huge deal. A bit embarrassing is all. Nice to hear from you again! --- O'Donnell wrote: > Just a quick hello from a newbie. > > I was born with spina bifida and discovered I had a > tethered cord about 5 > years ago, following a cycling accident. > > I had an MRI scan then, and I agreed with my > neurologist that the > risk/benefit ratio was much in favour of doing > nothing. (At that time I was > a member of mailing list called tcs-aa, which > doesn't seem to exist any > longer - is this one a descendent of it?). > > 5 years down the road, I think that there are signs > of further > deterioration. I'm now prone to urinary infections > due to my bladder not > emptying properly. I think that my gait has got > worse, as has my balance. I > increasingly find myself staggering as though I was > drunk, which is rather > embarassing. > > However, all of those are subjective impressions, so > I'm to have a second > MRI scan to see if there has been any further > tethering. Rather more > unpleasantly, I'm also having a flexible cystoscopy > (has anyone else had one > of these?) > > Anyway, I wondered if any of that rang any bells > with anyone else. The > appointment with the neurologist was yesterday, so > I'm still feeling a bit > funny about it all. > > > > PS I'm in Edinburgh - any other Brits on the list? > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2002 Report Share Posted April 11, 2002 Hi ! Glad to hear from you again, but not necessarily that you're having some problems. And yep, all those signs sound familiar. Interesting your question about Brits - I've got a woman visiting me right now from Bristol, who had tethered cord surgery last year. If you go to our web site - www.tsc-support.org and scan down to Nina's story - that's who's here in Memphis at the moment! She has a web site she set up to try to help folks in the UK. -- Life is change ... Growth is optional ... Choose wisely. Kaiser Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2002 Report Share Posted April 11, 2002 Hi . You sound a lot like me. I was born with meningmyleocele which had to be removed as a newborn. Apparently that caused my tethered cord which i found out i had about 10 years ago. I have been following up with a nsg for about 3 years now. He took the wait and see approach to. I have deteriorated a lot over the past 2 years, especially that last year. My bladder started like yours. Started getting a urinary tract infection once a month, leaking, etc. My bladder doesn't empty either and they said that i have a neurogenic bladder. Anyway about 7 months ago i had to start self cathing because i couldn't empty my bladder. I had the cysto done. Its not bad at all. I have had it done twice. The last one i had done he also done a vcug to see if i had kidney reflux and i did. I had surgery for that in November of last year. I have only had one urinary tract infection since the surgery. I'd see if he will check you for that while you are there. My foot has gotten worse in that i'm now walking on the side of it and my toes are curled. So a few weeks ago on my nsg visit he decided that it is time for surgery. So i have surgery to release my cord on the 17th of this month. I know that there are risks with the surgery, but i wouldn't risk getting any worse. The fact that i am now having to self cath is what got my nsg and my foot to. He told me that if i didn't have the surgery that i would keep deteriorating and wouldn't be able to walk in 3 or 4 years. I would really talk to my nsg about this. Take care and God Bless, Sara > > > > Just a quick hello from a newbie. > > > > I was born with spina bifida and discovered I had > a tethered cord about 5 > > years ago, following a cycling accident. > > > > I had an MRI scan then, and I agreed with my > neurologist that the > > risk/benefit ratio was much in favour of doing > nothing. (At that time I was > > a member of mailing list called tcs-aa, which > doesn't seem to exist any > > longer - is this one a descendent of it?). > > > > 5 years down the road, I think that there are > signs of further > > deterioration. I'm now prone to urinary infections > due to my bladder not > > emptying properly. I think that my gait has got > worse, as has my balance. I > > increasingly find myself staggering as though I > was drunk, which is rather > > embarassing. > > > > However, all of those are subjective impressions, > so I'm to have a second > > MRI scan to see if there has been any further > tethering. Rather more > > unpleasantly, I'm also having a flexible > cystoscopy (has anyone else had one > > of these?) > > > > Anyway, I wondered if any of that rang any bells > with anyone else. The > > appointment with the neurologist was yesterday, so > I'm still feeling a bit > > funny about it all. > > > > > > > > PS I'm in Edinburgh - any other Brits on the list? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Hi, . > Just a quick hello from a newbie. Allmost > tcs-aa, which doesn't seem to exist any > longer - is this one a descendent of it?). Yes correct > 5 years down the road, I think that there are signs of further > deterioration. I'm now prone to urinary infections due to my bladder not > emptying properly. I think that my gait has got worse, as has my balance. I > increasingly find myself staggering as though I was drunk, which is rather > embarassing. When i walk it's the same ,but no change after after 5 MRI's in six years. I do have changing symthones , do nerve damage and to heavy work i'll think. > unpleasantly, I'm also having a flexible cystoscopy (has anyone else had one > of these?) Yes , they bring in a catheter ,but that felt strange only when they bring it in. Then pump the blader full and empty. I go not to tell you details , but if your blader is spastic , just the same as i had. It goes to be a real mess. hihi. > Anyway, I wondered if any of that rang any bells with anyone else. The > appointment with the neurologist was yesterday, so I'm still feeling a bit > funny about it all. Do not tell anyone . hihi > > PS I'm in Edinburgh - any other Brits on the list? Jan.Willem Harmelen , 10 KM from Utrecht and 45 from Amsterdam, Netherlands. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Hi I know of at least three other Brits on the list apart from myself. I have been on this group (and its predecessor TCS-AA) for about two & a half years and find it reassuring to find that the level of medical knowledge in the UK is not so different from that in the States. I live in Leicester and was untethered in 2000 at Queens Medical Centre, Nottingham. Regards New to group > Just a quick hello from a newbie. > > I was born with spina bifida and discovered I had a tethered cord about 5 > years ago, following a cycling accident. > > I had an MRI scan then, and I agreed with my neurologist that the > risk/benefit ratio was much in favour of doing nothing. (At that time I was > a member of mailing list called tcs-aa, which doesn't seem to exist any > longer - is this one a descendent of it?). > > 5 years down the road, I think that there are signs of further > deterioration. I'm now prone to urinary infections due to my bladder not > emptying properly. I think that my gait has got worse, as has my balance. I > increasingly find myself staggering as though I was drunk, which is rather > embarassing. > > However, all of those are subjective impressions, so I'm to have a second > MRI scan to see if there has been any further tethering. Rather more > unpleasantly, I'm also having a flexible cystoscopy (has anyone else had one > of these?) > > Anyway, I wondered if any of that rang any bells with anyone else. The > appointment with the neurologist was yesterday, so I'm still feeling a bit > funny about it all. > > > > PS I'm in Edinburgh - any other Brits on the list? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2002 Report Share Posted April 13, 2002 Hi , Have you searched for any papers written by your neurosurgeon? It's always interesting to see their view on things from what they have published. My neurosurgeon is Mr P.T. Van Hille at Leeds General Infirmary. He truly believes that surgery would not benefit me in anyway. So what he's concentrating on is management. Management of the pain, monitoring the situation etc. I see him every 6 months, and a urologist every year. I've had a CT scan, MRI, Urodynamics, nerve conduction test and regular ultrasounds on my kidneys. So far I'm active, and the pain isn't too bad. I do feel somewhat " bitter " to the medical profession for failing to diagnose this earlier. I was born with SB and operated on at 3 months. The TCS was diagnosed in March 2001, dispite numerous visits over 20 years complaining of leg weakness, back pain, bladder/bowel problems. Pam c > from: O'Donnell > date: Thu, 11 Apr 2002 21:57:29 > to: tetheredspinalcord > subject: RE: New to group > > > Hi ., > > > > I'm a fellow Brit and there are a few of us on here! I'm from > > Yorkshire. Had the Cystoscopy last year and it isn't painful. > > > > My neurosurgeon thinks that the risks/benefits of surgery favour > > doing nothing to, although my symptoms are also progressing. > > > > Pam > > Hi Pam, > > The progression thing is a worry, isn't it? If the MRI scan confirms that > there has indeed been more tethering then I'm still not sure what I'll do. A > lot will depend upon what the neurologist says. He's very much in the > on Justice mould(apologise to non-Brits unfamiliar with one of our > great character actors) which I find strangely reassuring:-) > > I have the cystoscopy next week. I think that men tend to be more squeamish > about that kind of thing than women for whatever reason.. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Welcome Sally, It wounds like he is having a herxheimer reaction to the antibiotics. This is always a tough thing for parents to watch because it is a temporary regression and exasperation of symptoms. Bugs are dying off and releasing toxins which causes this. It's very important to support him through this process (of course call your doctor as well and let them know what is going on). Do you have any binders on board? Many of us use activated charcoal, citrus pectin, nanotek chitosan, etc.? Be sure to help him through the fevers NATURALLY, we don't want to suppress his immune system while it's trying to fight by giving aspirin or advil/motrin. Good news though...he can get a fever! His immune system is trying to fight, this is much better than most of our kids put out. Also...bugs are dying, that's good too. So there are some positives here. I know the 2-3 yr backwards can be heartbreaking. My son does this too and I nearly lose my mind stressing about it. I've watched him within a 2 hour period go from nearly perfect speech, on the ball, looking typical to.....slurred speech, rocking back and forth, loss of muscle strength and a headache. It took 4 days of absence at school, detox, binders and rest to get him back. Guess what the culprit was....rancid applegate farms pepperoni! I didn't know it was rancid, I should've known better. But the good news is, he came back after that 4 days. Your son will come back too. Other moms will chime in, this is a smart group and we are glad you are here. Take care, Tami Duncan Executive Director www.liafoundation.org Hi fellow parents,I'm new to this group, and have a few questions.My son's Igenx test results were fuzzy- he wasn't positive or negative so we are trying anti bodics for 6 weeks and will retake the test again.He is 8 yr olds, and we have tried everything: speech, aba, every diet, hbot- which has helped, ot, pt, supplements, you name it- we've tried it.Since we started his anti bodics- he has regressed almost 2-3 yrs backwards. I'm trying to hold it together and remind myself that there are many steps backwards to make 1 step forward, but is this common?He is experiencing headaches, fevers come and go throughout the day and his sensitivity to sound is off the charts. He is crying for no reason and then15 minutes later- all happy like nothing happened.If anyone can share some insight I'd really appreciate it.Regards,Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Hmmm. Sound sensitivity and fevers makes me think that babesia is flaring while treating borrelia. Which antibiotics are you giving him? It is unlikely that he has only borrelia and not either babesia or bartonella or both. My son showed both improvements and regression while treating on antibiotics. But each subsequent one added would clear up the issues of a prior one. Caryn > > Hi fellow parents, > > I'm new to this group, and have a few questions. > > My son's Igenx test results were fuzzy- he wasn't positive or negative so we are trying anti > bodics for 6 weeks and will retake the test again. > > He is 8 yr olds, and we have tried everything: speech, aba, every diet, hbot- which has > helped, ot, pt, supplements, you name it- we've tried it. > > Since we started his anti bodics- he has regressed almost 2-3 yrs backwards. I'm trying > to hold it together and remind myself that there are many steps backwards to make 1 step > forward, but is this common? > > He is experiencing headaches, fevers come and go throughout the day and his sensitivity > to sound is off the charts. He is crying for no reason and then15 minutes later- all happy > like nothing happened. > > If anyone can share some insight I'd really appreciate it. > > Regards, > Sally > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2009 Report Share Posted August 1, 2009 Hey all! I'm new to the group but I've been lurking for awhile. I've already picked up some interesting bits of info so thanks for sharing. A little bit about me- I'm 33, two kids, great husband who puts up with my nuttiness. As long as I can remember I've had issues with food noises (chewing, clinking silverware, slurping, swallowing) and other human sounds (nose breathing, throat clearing, sniffling). I've added others to my trigger list: clocks ticking, dog licking paws. My reaction is mild to moderate anxiety with a definite urge to flee the situation. I was notorious for being the first person to finish an exam in college because I couldn't stand to be there another second. Listing all of my triggers makes me feel like I'm not doing very well but I feel like I'm doing better. I think I've controlled my environment so much that I'm able to avoid many toxic sounds. One thing I've tried really hard to do is try to avoid the negative thoughts that accompany the sounds. For example, when I hear someone sniffling, I plea with them internally to " get a tissue " . I've gotten better at just accepting the sound for what it is, rather than attaching negative thoughts to them. Well, that's my story, looking forward to hearing more about this issue. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2009 Report Share Posted August 2, 2009 Hey, , Welcome! Sounds like you have learned to deal quite well and thought it out to avoid the many pitfalls. Great job! Great husband. You're lucky there. Lynn New to group Hey all! I'm new to the group but I've been lurking for awhile. I've already picked up some interesting bits of info so thanks for sharing. A little bit about me- I'm 33, two kids, great husband who puts up with my nuttiness. As long as I can remember I've had issues with food noises (chewing, clinking silverware, slurping, swallowing) and other human sounds (nose breathing, throat clearing, sniffling). I've added others to my trigger list: clocks ticking, dog licking paws. My reaction is mild to moderate anxiety with a definite urge to flee the situation. I was notorious for being the first person to finish an exam in college because I couldn't stand to be there another second. Listing all of my triggers makes me feel like I'm not doing very well but I feel like I'm doing better. I think I've controlled my environment so much that I'm able to avoid many toxic sounds. One thing I've tried really hard to do is try to avoid the negative thoughts that accompany the sounds. For example, when I hear someone sniffling, I plea with them internally to " get a tissue " . I've gotten better at just accepting the sound for what it is, rather than attaching negative thoughts to them. Well, that's my story, looking forward to hearing more about this issue. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2009 Report Share Posted August 3, 2009 Hi and welcome to the group, you may or may not be aware that we are in the process of putting together a database full of information on people who have this condition, looking for a common link (more than we currently know) or something that has helped someone and might be able to help the rest of us.Like the GAP diet. If you find the time, can you please fill out the questions below? I hope you find what you are looking for here, I know that a lot of us have found a little piece of sanity here, as well as hope. First name: (your first name) Last Name: (your last name) Age: (your current age) Age of onset: (the age you can first remember being effect by 4S) Sex:(m/f) Height: (your height): Weight: (your weight) Triggers: (please list all of your triggers) Trigger level: (please list the level of reaction you have the each of the triggers above 0 = no effect 10 = largest possible anguish) First trigger: (please list the first trigger that you can remember) Genetic: (does any one else in your family have this condition?) Birth place:(please list where you were born) Remedies: (what have you do in the past or are currently doing to try and help with your 4s) Results:( what were the results of the remedies you have tried in the past) Other mental condition: (have you been diagnosed with any other mental condition such as OCD etc) Please note that I will be keeping all information private and will only be used inside this group, if any information is to be given to another party I will confirm with each person who has filled out the database for their permission before proceeding. Please note that I can not control any information that is given publicly, if you wish to send me a private message or email with the above information please do so. Please note anyone else who has not filled out this information, if you wish , can you please take the time to do so. Warm Regards Smyser wrote: Hey all! I'm new to the group but I've been lurking for awhile. I've already picked up some interesting bits of info so thanks for sharing. A little bit about me- I'm 33, two kids, great husband who puts up with my nuttiness. As long as I can remember I've had issues with food noises (chewing, clinking silverware, slurping, swallowing) and other human sounds (nose breathing, throat clearing, sniffling). I've added others to my trigger list: clocks ticking, dog licking paws. My reaction is mild to moderate anxiety with a definite urge to flee the situation. I was notorious for being the first person to finish an exam in college because I couldn't stand to be there another second. Listing all of my triggers makes me feel like I'm not doing very well but I feel like I'm doing better. I think I've controlled my environment so much that I'm able to avoid many toxic sounds. One thing I've tried really hard to do is try to avoid the negative thoughts that accompany the sounds. For example, when I hear someone sniffling, I plea with them internally to "get a tissue". I've gotten better at just accepting the sound for what it is, rather than attaching negative thoughts to them. Well, that's my story, looking forward to hearing more about this issue. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2009 Report Share Posted August 3, 2009 HI, I too have not put this information in database, what's the link to this database or should I email the answeres for the following questions? Hi and welcome to the group, you may or may not be aware that we are in the process of putting together a database full of information on people who have this condition, looking for a common link (more than we currently know) or something that has helped someone and might be able to help the rest of us.Like the GAP diet.If you find the time, can you please fill out the questions below? I hope you find what you are looking for here, I know that a lot of us have found a little piece of sanity here, as well as hope.First name: (your first name)Last Name: (your last name)Age: (your current age)Age of onset: (the age you can first remember being effect by 4S)Sex:(m/f) Height: (your height): Weight: (your weight) Triggers: (please list all of your triggers)Trigger level: (please list the level of reaction you have the each of the triggers above 0 = no effect 10 = largest possible anguish) First trigger: (please list the first trigger that you can remember) Genetic: (does any one else in your family have this condition?)Birth place:(please list where you were born)Remedies: (what have you do in the past or are currently doing to try and help with your 4s) Results:( what were the results of the remedies you have tried in the past)Other mental condition: (have you been diagnosed with any other mental condition such as OCD etc)Please note that I will be keeping all information private and will only be used inside this group, if any information is to be given to another party I will confirm with each person who has filled out the database for their permission before proceeding. Please note that I can not control any information that is given publicly, if you wish to send me a private message or email with the above information please do so.Please note anyone else who has not filled out this information, if you wish , can you please take the time to do so.Warm Regards Smyser wrote: Hey all!I'm new to the group but I've been lurking for awhile. I've already picked up some interesting bits of info so thanks for sharing. A little bit about me- I'm 33, two kids, great husband who puts up with my nuttiness. As long as I can remember I've had issues with food noises (chewing, clinking silverware, slurping, swallowing) and other human sounds (nose breathing, throat clearing, sniffling). I've added others to my trigger list: clocks ticking, dog licking paws. My reaction is mild to moderate anxiety with a definite urge to flee the situation. I was notorious for being the first person to finish an exam in college because I couldn't stand to be there another second. Listing all of my triggers makes me feel like I'm not doing very well but I feel like I'm doing better. I think I've controlled my environment so much that I'm able to avoid many toxic sounds. One thing I've tried really hard to do is try to avoid the negative thoughts that accompany the sounds. For example, when I hear someone sniffling, I plea with them internally to "get a tissue". I've gotten better at just accepting the sound for what it is, rather than attaching negative thoughts to them. Well, that's my story, looking forward to hearing more about this issue. Looking for local information? Find it on Yahoo! Local Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2009 Report Share Posted August 3, 2009 Hello Mala, Thanks for your response. Please email them to me either personally or through the main board email. Thank you all who have already taken the time to fill out the requested information. a large majority of you will have had responses from me tonight. I have had to re build the database as I have changed computer but used this time to clarify a few questions. Again sorry it has taken so long I have been very busy. In the change I have lost some of the emails that I had, so I will be back tracking through the board to see what I can dig up. The information has been very interesting. I will be compiling it into a graph later and posting it on the board in regards to the number of triggers people where effected to and the trigger. I will not be sending out any personal information, merely just triggers and response levels. Little steps, and each step we get closer to finding something new out. By the way, if you have filled out this information and would like to add something, please do so by adding to the list down the bottom. Warmest Regards McKenna Mala Muley wrote: HI, I too have not put this information in database, what's the link to this database or should I email the answeres for the following questions? Hi and welcome to the group, you may or may not be aware that we are in the process of putting together a database full of information on people who have this condition, looking for a common link (more than we currently know) or something that has helped someone and might be able to help the rest of us.Like the GAP diet. If you find the time, can you please fill out the questions below? I hope you find what you are looking for here, I know that a lot of us have found a little piece of sanity here, as well as hope. First name: (your first name) Last Name: (your last name) Age: (your current age) Age of onset: (the age you can first remember being effect by 4S) Sex:(m/f) Height: (your height): Weight: (your weight) Triggers: (please list all of your triggers) Trigger level: (please list the level of reaction you have the each of the triggers above 0 = no effect 10 = largest possible anguish) First trigger: (please list the first trigger that you can remember) Genetic: (does any one else in your family have this condition?) Birth place:(please list where you were born) Remedies: (what have you do in the past or are currently doing to try and help with your 4s) Results:( what were the results of the remedies you have tried in the past) Other mental condition: (have you been diagnosed with any other mental condition such as OCD etc) Please note that I will be keeping all information private and will only be used inside this group, if any information is to be given to another party I will confirm with each person who has filled out the database for their permission before proceeding. Please note that I can not control any information that is given publicly, if you wish to send me a private message or email with the above information please do so. Please note anyone else who has not filled out this information, if you wish , can you please take the time to do so. Warm Regards Smyser wrote: Hey all! I'm new to the group but I've been lurking for awhile. I've already picked up some interesting bits of info so thanks for sharing. A little bit about me- I'm 33, two kids, great husband who puts up with my nuttiness. As long as I can remember I've had issues with food noises (chewing, clinking silverware, slurping, swallowing) and other human sounds (nose breathing, throat clearing, sniffling). I've added others to my trigger list: clocks ticking, dog licking paws. My reaction is mild to moderate anxiety with a definite urge to flee the situation. I was notorious for being the first person to finish an exam in college because I couldn't stand to be there another second. Listing all of my triggers makes me feel like I'm not doing very well but I feel like I'm doing better. I think I've controlled my environment so much that I'm able to avoid many toxic sounds. One thing I've tried really hard to do is try to avoid the negative thoughts that accompany the sounds. For example, when I hear someone sniffling, I plea with them internally to "get a tissue". I've gotten better at just accepting the sound for what it is, rather than attaching negative thoughts to them. Well, that's my story, looking forward to hearing more about this issue. Looking for local information? Find it on Yahoo! Local Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2009 Report Share Posted August 3, 2009 Hi , Just to let you know, as you've asked again for people to fill out this database form, I haven't filled it out as I don't want to participate for privacy reasons. Adrienne To: Soundsensitivity Sent: Monday, 3 August, 2009 6:36:49 PMSubject: Re: New to group Hi and welcome to the group, you may or may not be aware that we are in the process of putting together a database full of information on people who have this condition, looking for a common link (more than we currently know) or something that has helped someone and might be able to help the rest of us.Like the GAP diet..If you find the time, can you please fill out the questions below? I hope you find what you are looking for here, I know that a lot of us have found a little piece of sanity here, as well as hope.First name: (your first name)Last Name: (your last name)Age: (your current age)Age of onset: (the age you can first remember being effect by 4S)Sex:(m/f) Height: (your height): Weight: (your weight) Triggers: (please list all of your triggers)Trigger level: (please list the level of reaction you have the each of the triggers above 0 = no effect 10 = largest possible anguish) First trigger: (please list the first trigger that you can remember) Genetic: (does any one else in your family have this condition?)Birth place:(please list where you were born)Remedies: (what have you do in the past or are currently doing to try and help with your 4s) Results:( what were the results of the remedies you have tried in the past)Other mental condition: (have you been diagnosed with any other mental condition such as OCD etc)Please note that I will be keeping all information private and will only be used inside this group, if any information is to be given to another party I will confirm with each person who has filled out the database for their permission before proceeding. Please note that I can not control any information that is given publicly, if you wish to send me a private message or email with the above information please do so.Please note anyone else who has not filled out this information, if you wish , can you please take the time to do so.Warm Regards Smyser wrote: Hey all!I'm new to the group but I've been lurking for awhile. I've already picked up some interesting bits of info so thanks for sharing. A little bit about me- I'm 33, two kids, great husband who puts up with my nuttiness. As long as I can remember I've had issues with food noises (chewing, clinking silverware, slurping, swallowing) and other human sounds (nose breathing, throat clearing, sniffling). I've added others to my trigger list: clocks ticking, dog licking paws. My reaction is mild to moderate anxiety with a definite urge to flee the situation. I was notorious for being the first person to finish an exam in college because I couldn't stand to be there another second. Listing all of my triggers makes me feel like I'm not doing very well but I feel like I'm doing better. I think I've controlled my environment so much that I'm able to avoid many toxic sounds. One thing I've tried really hard to do is try to avoid the negative thoughts that accompany the sounds. For example, when I hear someone sniffling, I plea with them internally to "get a tissue". I've gotten better at just accepting the sound for what it is, rather than attaching negative thoughts to them. Well, that's my story, looking forward to hearing more about this issue. Access Yahoo!7 Mail on your mobile. Anytime. Anywhere. Show me how. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2009 Report Share Posted August 4, 2009 Hello Adrienne, Thank you for your response. I respect your opinion. I know that a lot of you must feel this way, I would too and in fact do with sharing such personal information. Which is why I, just like everyone else here, must obey the same rules that Dr. set up to be displayed at the bottom of our emails. I have copied it here for ease of reference because I know my phone sometimes deletes this info. **** PLEASE BE AWARE THIS IS A STRICTLY CONFIDENTIAL GROUP AND NO MESSAGES ARE TO BE USED FOR ANY PURPOSE OUTSIDE OF THE YAHOO GROUP MEMBERSHIP SITE OR REPRODUCED OR COPIED AND MAILED FOR ANY PURPOSE. ALSO DO NOT SHARE MEMBER EMAIL ADDRESSES OR NAMES WITH ANYONE. Thank you. MJ ***** I will uphold this rule with any and all information that is sent to me weather it be publicly visible here on this forum, or by a private message or email. I will not disclose any identifying information that I have received from anybody unless prior consent is first obtained. I am creating this database to try and find a common link that might be over looked and I would like to point out that I am not a doctor and do not have any medical qualifications. I am just a fellow 4S suffer who is tired of not taking any proactive action towards this condition. Information is key, and I believe that having it all in one place for easy reference is an invaluable tool. I am tired of this condition ruling my life and will devote a great deal of time and strength to bring any awareness, scraps of hope and information together so hopefully it can create a clearer picture and with it, glimpse of a cure. The board states we currently have 955 members, ultimately the more information we gather and put together into one place the better, but in saying that, I will not pressure, and I hope nobody feels pressured to, supply their personal information. If anybody does not feel comfortable in adding to this database, please know that is ok and disregard these emails, for anyone that wishes to make an addition, please feel confident in the fact that your privacy is respected. I hope the above has made sense, if anyone has any questions / concerns or comments, please feel free to raise them Warmest Regards McKenna A W wrote: > > Hi , > > Just to let you know, as you've asked again for people to fill out > this database form, I haven't filled it out as I don't want to > participate for privacy reasons. > > Adrienne > > > > > ------------------------------------------------------------------------ > *From:* McKenna > *To:* Soundsensitivity > *Sent:* Monday, 3 August, 2009 6:36:49 PM > *Subject:* Re: New to group > > > > Hi and welcome to the group, you may or may not be aware that we > are in the process of putting together a database full of information > on people who have this condition, looking for a common link (more > than we currently know) or something that has helped someone and might > be able to help the rest of us.Like the GAP diet.. > > If you find the time, can you please fill out the questions below? I > hope you find what you are looking for here, I know that a lot of us > have found a little piece of sanity here, as well as hope. > > First name: (your first name) > Last Name: (your last name) > Age: (your current age) > Age of onset: (the age you can first remember being effect by 4S) > Sex:(m/f) > Height: (your height): > Weight: (your weight) > Triggers: (please list all of your triggers) > Trigger level: (please list the level of reaction you have the each of > the triggers above 0 = no effect 10 = largest possible anguish) > First trigger: (please list the first trigger that you can remember) > Genetic: (does any one else in your family have this condition?) > Birth place:(please list where you were born) > Remedies: (what have you do in the past or are currently doing to try > and help with your 4s) > Results:( what were the results of the remedies you have tried in the > past) > Other mental condition: (have you been diagnosed with any other mental > condition such as OCD etc) > > Please note that I will be keeping all information private and will > only be used inside this group, if any information is to be given to > another party I will confirm with each person who has filled out the > database for their permission before proceeding. Please note that I > can not control any information that is given publicly, if you wish to > send me a private message or email with the above information please > do so. > > Please note anyone else who has not filled out this information, if > you wish , can you please take the time to do so. > > Warm Regards > > > > Smyser wrote: > >> >> >> Hey all! >> I'm new to the group but I've been lurking for awhile. I've already >> picked up some interesting bits of info so thanks for sharing. A >> little bit about me- I'm 33, two kids, great husband who puts up with >> my nuttiness. As long as I can remember I've had issues with food >> noises (chewing, clinking silverware, slurping, swallowing) and other >> human sounds (nose breathing, throat clearing, sniffling). I've added >> others to my trigger list: clocks ticking, dog licking paws. My >> reaction is mild to moderate anxiety with a definite urge to flee the >> situation. I was notorious for being the first person to finish an >> exam in college because I couldn't stand to be there another second. >> Listing all of my triggers makes me feel like I'm not doing very well >> but I feel like I'm doing better. I think I've controlled my >> environment so much that I'm able to avoid many toxic sounds. One >> thing I've tried really hard to do is try to avoid the negative >> thoughts that accompany the sounds. For example, when I hear someone >> sniffling, I plea with them internally to " get a tissue " . I've gotten >> better at just accepting the sound for what it is, rather than >> attaching negative thoughts to them. Well, that's my story, looking >> forward to hearing more about this issue. >> >> > > ------------------------------------------------------------------------ > Access Yahoo!7 Mail on your mobile. Anytime. Anywhere. Show me how > <http://au.rd.yahoo.com/mail/mobile/tagline/*http://au.mobile.yahoo.com/mail>. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 That is my thought process also. I am completing a degree in psychology, but from what I've elarnt of Autism, we well fit the majority of diagnostic criteria. To: Soundsensitivity Sent: Thursday, 6 August, 2009 6:46:50 AMSubject: Re: Re: New to group Hello! Obviously this is just my opinion, but I totally agree with the Autistic Spectrum Condition link. I'm currently doing a Masters in Advanced Practice, specialising in Autism, which means I will assess / diagnose / treat and refer individuals with Autism. The fact that they are called "Spectrum Conditions" highlights how individuals can suffer from difficulties in either all, or just one of the areas associated with Autism. , x. From: annareutzel <annareutzel@ yahoo.com>To: Soundsensitivity@ yahoogroups. comSent: Wednesday, August 5, 2009 6:03:19 PMSubject: Re: New to group I agree. For years when I've found myself needing to explain my weirdness to others I've described it as a sensory intergration problem. Since I work with kids with autism a lot of the people I'm around are familiar with sensory integration issues. I've expressed this opinion before, but I think it's undeniable that it is a sensory integration disorder. We are unable to successfully integrate (ignore) sensory info. I don't know what the diagnostic criteria for SID are, but I'm curious if we fit them.I'm so sorry about the Meniere's, that's a tough road to hoe. Are you having success controlling it?> >> > Hey all!> > I'm new to the group but I've been lurking for awhile. I've already picked up some interesting bits of info so thanks for sharing. A little bit about me- I'm 33, two kids, great husband who puts up with my nuttiness. As long as I can remember I've had issues with food noises (chewing, clinking silverware, slurping, swallowing) and other human sounds (nose breathing, throat clearing, sniffling). I've added others to my trigger list: clocks ticking, dog licking paws. My reaction is mild to moderate anxiety with a definite urge to flee the situation. I was notorious for being the first person to finish an exam in college because I couldn't stand to be there another second. Listing all of my triggers makes me feel like I'm not doing very well but I feel like I'm doing better. I think I've controlled my environment so much that I'm able to avoid many toxic sounds. One thing I've tried really hard to do is try to avoid the negative thoughts that accompany the sounds.. For example, when I hear someone sniffling, I plea with them internally to "get a tissue". I've gotten better at just accepting the sound for what it is, rather than attaching negative thoughts to them. Well, that's my story, looking forward to hearing more about this issue.> > > >> Find local businesses and services in your area with Yahoo!7 Local. Get started. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 hahaha the autistic closet! To: Soundsensitivity Sent: Thursday, 6 August, 2009 12:26:06 PMSubject: Re: Re: New to group Hi , It's also my opinion too! I got a referral today for some autistic/asperger' s syndrome testing, and I can't wait. I have to put it off for a little while (surgery), but just from doing independant research I can tell I fit the condition! My aunt came out of the autistic closet, I have 3 cousins (same family) 2 are autistic, 1 has aspergers. Are there qualities or educational requirements I should be looking for (for testing)? Is one better than the other? Finally, how much of this is genetic? Thanks! kip From: <sarah.leahcrossley@ yahoo.com>To: Soundsensitivity@ yahoogroups. comSent: Wednesday, August 5, 2009 4:46:50 PMSubject: Re: Re: New to group Hello! Obviously this is just my opinion, but I totally agree with the Autistic Spectrum Condition link. I'm currently doing a Masters in Advanced Practice, specialising in Autism, which means I will assess / diagnose / treat and refer individuals with Autism. The fact that they are called "Spectrum Conditions" highlights how individuals can suffer from difficulties in either all, or just one of the areas associated with Autism. , x. From: annareutzel <annareutzel@ yahoo.com>To: Soundsensitivity@ yahoogroups. comSent: Wednesday, August 5, 2009 6:03:19 PMSubject: Re: New to group I agree. For years when I've found myself needing to explain my weirdness to others I've described it as a sensory intergration problem. Since I work with kids with autism a lot of the people I'm around are familiar with sensory integration issues.. I've expressed this opinion before, but I think it's undeniable that it is a sensory integration disorder. We are unable to successfully integrate (ignore) sensory info. I don't know what the diagnostic criteria for SID are, but I'm curious if we fit them.I'm so sorry about the Meniere's, that's a tough road to hoe. Are you having success controlling it?> >> > Hey all!> > I'm new to the group but I've been lurking for awhile. I've already picked up some interesting bits of info so thanks for sharing. A little bit about me- I'm 33, two kids, great husband who puts up with my nuttiness. As long as I can remember I've had issues with food noises (chewing, clinking silverware, slurping, swallowing) and other human sounds (nose breathing, throat clearing, sniffling). I've added others to my trigger list: clocks ticking, dog licking paws. My reaction is mild to moderate anxiety with a definite urge to flee the situation. I was notorious for being the first person to finish an exam in college because I couldn't stand to be there another second. Listing all of my triggers makes me feel like I'm not doing very well but I feel like I'm doing better. I think I've controlled my environment so much that I'm able to avoid many toxic sounds. One thing I've tried really hard to do is try to avoid the negative thoughts that accompany the sounds... For example, when I hear someone sniffling, I plea with them internally to "get a tissue". I've gotten better at just accepting the sound for what it is, rather than attaching negative thoughts to them. Well, that's my story, looking forward to hearing more about this issue.> > > >> Find local businesses and services in your area with Yahoo!7 Local. Get started. Quote Link to comment Share on other sites More sharing options...
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