Re: New to group

[Guest guest]

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

> from: O'Donnell

> date: Thu, 11 Apr 2002 00:32:17

> to: tetheredspinalcord

> subject: Re: 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?

>

>

>

>

>

[Guest guest]

> 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..

[Guest guest]

Hi , I'm Nina Bunton (a Brit) and am using 's email at present.

I live in Bristol and had a detethering surgery last July for a thickened

filum terminale. It has been a long recovery period but ultimately the surgery

has been a success. It is VERY scary deciding whether to go ahead with the

surgery but as my symptoms were progressing (tingly and/or numb feet, back

and leg nerve pain, early signs of bladder incontinence etc.) my neurosurgeon

said it was best to go ahead with detethering. Please go to my own website,

which I wrote before, during and after this (horrid) period in my life, and

you can see what you might expect immediately post-op and recovery period.

The address is http://www.btinternet.com/~tetheredcordresources. If you want

to ask me any questions that arise, let me know and I will try to get the

answers for you. PLEASE use my own email address (NOT this one I am using

now!) which is nina.bunton@...

When I am back in the UK (wef 22nd April) I can reply to emails.

Best wishes

Nina

O'Donnell wrote:

Hi .,I'm a fellow Brit and there are a few of us on here! I'm fromYorkshire. Had the Cystoscopy last year and it isn't painful.My neurosurgeon thinks that the risks/benefits of surgery favourdoing 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 thatthere has indeed been more tethering then I'm still not sure what I'll do. Alot will depend upon what the neurologist says. He's very much in the on Justice mould(apologise to non-Brits unfamiliar with one of ourgreat character actors) which I find strangely reassuring:-)I have the cystoscopy next week. I think that men tend to be more squeamishabout that kind of thing than women for whatever reason..

[Guest guest]

There are many strains of babesia too. There is a new book out this

month by Schaller on babesia. For my son, babesia caused excessive

thirst, sound sensitivity, anxiety, digestive issues and gross motor

delays. We treated him with mepron. I am currently treating for

babesia and taking clarithromycin + malarone + mepron + artemisiae by

Zhang. I tested positive for babesia microti on the igenex

coinfection panel. My son was positive on mayo labs and my husband

was not positive, but DS dx him based on symptoms. Some are using

alinia. You should review symptoms and discuss the possibility of

the treatments with your practitioner.

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

> >

>

>

>

>

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[Guest guest]

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.

[Guest guest]

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

To: Soundsensitivity Sent: 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.> > > >>

[Guest guest]

, Kip, Waleska,

I so agree with you all. I have had sensory issues since a child, had

problems with eye contact, a number in the autistic spectrum, and it

would seem neurological seems to fit. Totally agree! Sadly, I have a

2nd cousin and my nephew also, but no one wants to admit there's a

problem in the family. If you don't see it, it must not be there:)

Just whisper how strange we are!

Lynn

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.

> >

> >

>

0D

[Guest guest]

Hi Kip - sorry for the delay.

I am attaching an Asperger's Syndrome assessment for you to look at. There are slight differences between Asperger's and High Functioning Autism:

Both people with HFA and AS are affected by the triad of impairments common to all people with autism.

Both groups are likely to be of average or above average intelligence.

The debate as to whether we need two diagnostic terms is ongoing.

However, there may be features such as age of onset and motor skill deficits which differentiate the two conditions.

Some people say that people with Aspergers are more clumsy (sounds strange I know) than people with HFA.

And yes, there is a genetic link with Autistic Spectrum Conditions.

Hope this helps! , x.

To: Soundsensitivity Sent: Thursday, August 6, 2009 3:26:06 AMSubject: 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.> > > >>

1 of 1 File(s)

The ASDI Gilberg.doc

[Guest guest]

Maybe we can persuade movie theaters to have a section for people with

headphones and the seats can have jacks in them.

This would provide a service for us and people hard of hearing. I would bring

my noise canceling Sennheisers and be set. I wear them sometimes not even

hooked to anything instead of earplugs.

When I wear earplugs, I get annoyed by my own breathing and whatnot.

>

> Hi Everyone,

> I've been reading this group for a few weeks now and it is amazing how

> similar everyone's symptoms are to mine. It seems to me that there must

> be a pretty specific physiological source to 4S, considering the

> similarities between most people's triggers and reactions.

>

> I guess I have pretty classic 4S. It started in my early teenage years

> and now I'm in my early 30's, so I guess I won't be outgrowing it. My

> trigger sounds are mostly centered around eating, but mouse clicking,

> keyboard typing, gum smacking, fingernail clipping, basically any

> short/sharp sounds can be triggers. I've tried different coping

> mechanisms, but avoidance is easiest and always works best, although it

> would be nice to be able to go to the movies without wearing ear plugs!

> Maybe I'll open a food-less movie theater chain...

>

> I do love music and play several instruments. I haven't had my hearing

> tested, but it can be pretty acute. I can easily be bothered by someone

> eating two rooms away, where the sound is barely perceptible to most,

> but sounds like a train running through the room to me.

>

> I'm hoping someday to see a post titled " Hey I found the secret cure! " ,

> but that probably won't happen. In the mean time its good to hear that

> people are trying to find a solution or at least develop some reasonable

> treatments. Thanks everyone for sharing!

>

> Bernie

>