Question

[Guest guest]

Ok, thanks but may I ask what is Celiac Sprue?

>

>

> I have a question.... I have been reading posts from everyone and so many of

> y'all are or have been in trials. Also a lot of y'all have had blood

> transfusions. Does everyone with CML eventually have to have a blood

> transfusion? Do I need to get people to start donating blood for me just in

> case? I just don't know what to expect IF the Gleevec ever does what it's

> supposed to do for me. I would like to know more about what to expect next.

>

> Thanks,

>

>

>

>

>

--

[Guest guest]

Good idea...thanks Suzzie!

Blessings,

From: suzzienovember <suzzienovember@...>

Subject: [ ] Re: Question

Date: Tuesday, June 30, 2009, 9:29 PM

Hi : The only trial I was in was for the Gleevec back in 2000, when I had

no other choices of treatment. This October will be 9 years of my Gleevec, and

Thank God have never had to get a transfusion.

You really cannot tell anyone if they will need one or not. Sometimes your

counts jump up and down, but your doctor monitors all of that.

In most cases, a transfusion is not necessary. It really depends on the person.

Take one day at a time, and try not to project into the future of what could be.

It will drive you nuts. I know, because I used to do that when I was first

diagnosed.

[Guest guest]

Hi Anita,

You should speak to an attorney for workermans compensation for that answer. 

There are statues of limitations. Only they can figure that out.  They work on

contingency most so there should be no out of pocket for consult.

 

  

God Bless !!

dragonflymcs

Mayleen

________________________________

From: Anita Tarlton <silver82956@...>

Sent: Tuesday, September 22, 2009 4:47:18 PM

Subject: [] Question

 

I became sick from the mold & contaminants at the school where I worked.  

[Guest guest]

Sounds all too familiar!!! I'd start to feel some better by Sunday then

back to school on Monday and by Wed. I could hardly think. I taught 5th grade

and found myself not able to spell words on the board! I would drive home

in the afternoon and wonder how I got home. It was absolutely frightening.

Keep in touch.

Sue

[Guest guest]

Thank you -- I'll look into that!As a teacher by profession, it became difficult

to work.  After a weekend away from school I'd get there on Monday able to talk.

 By Wednesdays, my voice was raspy; by Fridays I could barely speak above a

whisper.   I began planning my lessons around stuff where I didnt have to talk

on Thurs/Fri.

When I approached school administration about it -- they nearly ran me off.

 They made it VERY uncomfortable for me -- the principal (who had always been

very friendly with me) was borderline hostile to me with every conversation

after that.  When I mentioned I was thinking of retiring -- they couldnt wait to

hustle me out the door.  It was AWFUL, the last year and a half. 

Check out my blog at www.anitatarlton.blogspot.com  Nothing makes the earth

seem so spacious as to have friends at a distance; they make the latitudes and

longitudes.

Henry Thoreau

Hi Anita,

You should speak to an attorney for workermans compensation for that answer. 

There are statues of limitations. Only they can figure that out.  They work on

contingency most so there should be no out of pocket for consult.

[Guest guest]

My Pleasure,   I loose my voice as well. Step in, it is gone, step out it comes

back.  Really fast.  Very weird

 

God Bless !!

dragonflymcs

Mayleen

________________________________

From: Anita Tarlton <silver82956@...>

Sent: Tuesday, September 22, 2009 7:12:02 PM

Subject: Re: [] Question

 

Thank you -- I'll look into that!As a teacher by profession, it became difficult

to work.  After a weekend away from school I'd get there on Monday able to talk.

 By Wednesdays, my voice was raspy; by Fridays I could barely speak above a

whisper.   I began planning my lessons around stuff where I didnt have to talk

on Thurs/Fri.

When I approached school administration about it -- they nearly ran me off.

 They made it VERY uncomfortable for me -- the principal (who had always been

very friendly with me) was borderline hostile to me with every conversation

after that.  When I mentioned I was thinking of retiring -- they couldnt wait to

hustle me out the door.  It was AWFUL, the last year and a half. 

Check out my blog at www.anitatarlton. blogspot. com  Nothing makes the earth

seem so spacious as to have friends at a distance; they make the latitudes and

longitudes.

Henry Thoreau

Hi Anita,

You should speak to an attorney for workermans compensation for that answer. 

There are statues of limitations. Only they can figure that out.  They work on

contingency most so there should be no out of pocket for consult.

[Guest guest]

YES!!!  And without warning -- sometimes I dont even realize it until I try to

open my mouth to speak!  

My Pleasure,   I loose my voice as well. Step in, it is gone, step out it comes

back.  Really fast.  Very weird

God Bless !!

Mayleen

[Guest guest]

It sounds like you have Vocal Cord Dysfunction. The toxins attack the

trigeminal nerve which is involved with your vocal cords.

_______________________________

From: Anita Tarlton <silver82956@...>

Sent: Wednesday, September 23, 2009 5:46:56 AM

Subject: Re: [] Question

YES!!! And without warning -- sometimes I dont even realize it until I try to

open my mouth to speak!

[Guest guest]

it is like now I am mute and now I am not in seconds......... 

God Bless !!

dragonflymcs

Mayleen

________________________________

From: Anita Tarlton <silver82956@...>

Sent: Wednesday, September 23, 2009 8:46:56 AM

Subject: Re: [] Question

 

YES!!!  And without warning -- sometimes I dont even realize it until I try to

open my mouth to speak!  

[Guest guest]

I believe the attacks happenon previously injured organs.  My trigeminal nerve

suffered injury after an accident and I have always had problems sine.  The side

that susteained the injury is also the same side that always swells.  Since a

child a suffered from brohnchiis, nothing chronic but it is what I always got

insead of a cold once a year and that is also where my mold injury was in my

lungs.  I believe a previously injured organ, part of body is more suceptible to

mold injury 

 

 My vocal cords at 19 were attached to a tumor and suffered some injury, I have

vocal cord dysfunction from mold.  Do you see what I am saying ??

God Bless !!

dragonflymcs

Mayleen

________________________________

From: <brianc8452@...>

Sent: Wednesday, September 23, 2009 11:12:42 AM

Subject: Re: [] Question

 

It sounds like you have Vocal Cord Dysfunction. The toxins attack the trigeminal

nerve which is involved with your vocal cords.

[Guest guest]

---

Its really not weird, its your body trying to tell you something. I lose my

voice whenever I am around any triggers (mostly mold) and it has become a very

reliable source. If I lose my voice, I bolt out of the building asap. Learn to

listen to your body, it really knows what to do instictively.

In , dragonflymcs <dragonflymcs@...> wrote:

>

> My Pleasure,   I loose my voice as well. Step in, it is gone, step out it

comes back.  Really fast.  Very weird

>  

>

> God Bless !!

> dragonflymcs

> Mayleen

>

>

>

>

> ________________________________

> From: Anita Tarlton <silver82956@...>

>

> Sent: Tuesday, September 22, 2009 7:12:02 PM

> Subject: Re: [] Question

>

>  

> Thank you -- I'll look into that!As a teacher by profession, it became

difficult to work.  After a weekend away from school I'd get there on Monday

able to talk.  By Wednesdays, my voice was raspy; by Fridays I could barely

speak above a whisper.   I began planning my lessons around stuff where I didnt

have to talk on Thurs/Fri.

> When I approached school administration about it -- they nearly ran me off.

 They made it VERY uncomfortable for me -- the principal (who had always been

very friendly with me) was borderline hostile to me with every conversation

after that.  When I mentioned I was thinking of retiring -- they couldnt wait to

hustle me out the door.  It was AWFUL, the last year and a half. 

>

> Check out my blog at www.anitatarlton. blogspot. com  Nothing makes the earth

seem so spacious as to have friends at a distance; they make the latitudes and

longitudes.

> Henry Thoreau

>

>

>

> Hi Anita,

>

> You should speak to an attorney for workermans compensation for that answer. 

There are statues of limitations. Only they can figure that out.  They work on

contingency most so there should be no out of pocket for consult.

>

>

>

>

>

>

>

[Guest guest]

Exactly -- only if it is really " bad " and I stay in it too long, I'll be raspy

for the rest of the day.

 

From: dragonflymcs <dragonflymcs@...>

Subject: Re: [] Question

Date: Wednesday, September 23, 2009, 1:23 PM

 

it is like now I am mute and now I am not in seconds.....

..... 

God Bless !!

dragonflymcs

Mayleen

____________ _________ _________ __

From: Anita Tarlton <silver82956>

Sent: Wednesday, September 23, 2009 8:46:56 AM

Subject: Re: [] Question

 

YES!!!  And without warning -- sometimes I dont even realize it until I try to

open my mouth to speak!  

[Guest guest]

Thank you Diane   I do listen to my body, I know it is my body reacting and I do

bolt.  It is just weird how fast it happens and how fast it returns to normal,

seconds. 

  

God Bless !!

dragonflymcs

Mayleen

________________________________

From: dianebolton52 <dianebolton@...>

Sent: Wednesday, September 23, 2009 2:35:03 PM

Subject: [] Re: Question

 

---

Its really not weird, its your body trying to tell you something. I lose my

voice whenever I am around any triggers (mostly mold) and it has become a very

reliable source. If I lose my voice, I bolt out of the building asap. Learn to

listen to your body, it really knows what to do instictively.

In , dragonflymcs <dragonflymcs@ ...> wrote:

>

> My Pleasure,   I loose my voice as well. Step in, it is gone, step out it

comes back.  Really fast.  Very weird

>  

>

> God Bless !!

> dragonflymcs

> Mayleen

>

>

>

>

> ____________ _________ _________ __

> From: Anita Tarlton <silver82956@ ...>

>

> Sent: Tuesday, September 22, 2009 7:12:02 PM

> Subject: Re: [] Question

>

>  

> Thank you -- I'll look into that!As a teacher by profession, it became

difficult to work.  After a weekend away from school I'd get there on Monday

able to talk.  By Wednesdays, my voice was raspy; by Fridays I could barely

speak above a whisper.   I began planning my lessons around stuff where I didnt

have to talk on Thurs/Fri.

> When I approached school administration about it -- they nearly ran me off.

 They made it VERY uncomfortable for me -- the principal (who had always been

very friendly with me) was borderline hostile to me with every conversation

after that.  When I mentioned I was thinking of retiring -- they couldnt wait to

hustle me out the door.  It was AWFUL, the last year and a half. 

>

> Check out my blog at www.anitatarlton. blogspot. com  Nothing makes the earth

seem so spacious as to have friends at a distance; they make the latitudes and

longitudes.

> Henry Thoreau

>

>

>

> Hi Anita,

>

> You should speak to an attorney for workermans compensation for that answer. 

There are statues of limitations. Only they can figure that out.  They work on

contingency most so there should be no out of pocket for consult.

>

>

>

>

>

>

>

[Guest guest]

You had a bcr-abl one week apart!!You are good not to worry.

________________________________

From: <mylifemyhappiness@...>

Sent: Tue, October 6, 2009 11:35:54 AM

Subject: [ ] question

 

I had a bcr-abl done an inital diagnois the number was.003. last week it

was.0073. I was wondering how much i should be concerned or should i not. thanks

amanda

[Guest guest]

No the first one was done in may before i started treatment(.003). the other was

done last week after 4 months of treatment(.0073).

>

> You had a bcr-abl one week apart!!You are good not to worry.

>

>

>

>

> ________________________________

> From: <mylifemyhappiness@...>

>

> Sent: Tue, October 6, 2009 11:35:54 AM

> Subject: [ ] question

>

>  

> I had a bcr-abl done an inital diagnois the number was.003. last week it

was.0073. I was wondering how much i should be concerned or should i not. thanks

amanda

>

>

>

>

>

>

>

>

[Guest guest]

It is not uncommon to have low platlets. I have seen other instances. I myself

had to have one platlet infusion. Then my problem was low HMG. I had regular

transfusions for six months and took a Gleevec Vacation for six months before my

CML counts went up.

I cycled this a couple of times. I now have been off Gleevec 15 months and

hoping for 18 in Dec. I still have low CML readings but they have been stable

since Jan. I have never thought that I was rejecting Gleevec because my CML and

WBC have never jumped like it was no longer working.

Good Luck on getting everything back under control.

H.

DXD. 2/03

400mg Gleevec 3/03

Gleevec vacation since 7/08

>

> I am not sure, but I think I am rejecting Gleevec?

> I cannot maintain my platlets.. the other counts go

> down as well. I have been off Gleevec for a couple of

> weeks and my platlets whet up after the transfusion

> but have been tumbling ever since down to where I may

> need more this Thursday.. Is this common

> or is it just me...

>

> Be safe all

> Skip

>

> __________________________________________________

>

[Guest guest]

I don't know much about trans nasal wiring either but I'd like to know the

asnwer as well. What's the difference between trans nasal wiring and

canthoplasty in terms of opening up the inner corners of the eyes? Under what

condition is one precedure is prefered vs. the other? Also, typically, at what

age does this type of procedure is performed? Thanks to anyone who can give some

explanations.

, may I ask what doctor at which institution did your daughter see?

Thanks a lot.

Dawn

>

> I have a question. What is trans nasal wiring and why is it being done? I

haven't heard of this before and am interested to know about this. If you can

tell me anything that would be nice.

> By the way I haven't mailed you all in a while but my daughter is doing

great. She had her ptosis corrected last October and I am happy with the results

so far. We go back to see the Dr. at the end of this month to see how he thinks

she is doing. I hope you all are doing good and wish you luck on the surgeries

and the hard decisions you must make.

> Thanks

>

[Guest guest]

Hi Jill

Here is something I forwarded in March 2006. I hope it helps you.

Regards

Shireen Mohandes, London, England

Hardy is a doctor who used to work at Moorfields Eye Hospital in London,

England.

> >~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> >From: Hardy, Sent: 12 March 2006 11:36

> >Dear Shireen,

> >Thankyou for the email.

> >

> >Regarding trans-nasal wiring: This procedure is done when the

space between the inner angles of the eyes (which is widened in BPES,

and is called telecanthus) is too large to be corrected by operating

on the soft tissues in this area alone, especially the tendon which

connects the inner angles of the eyes to the bone on the side of the

nose. The wire is passed through around said tendons and then passed

through the nasal cavity to the other side, where it is connected to

the opposite tendon in a similar fashion.

The wire is tightened and effectively brings the inner angles of the

eye on each side closer together. The outcome can be a little

unpredictable in some cases.

Not that many people have had it done as it doesn't need to be done

too often, as the distance between the inner angles of the eyes is

usually not so great, but it certainly is done and has been done on

BPES patients treated at Moorfields (and elsewhere, of course!). I'm

afraid I can't easily find an image of the procedure to send you,

mainly because of copyright rules, but you could find it in a text

book of oculoplastic surgery if necessary.

You are absolutely right not to try to give medical advice - it can

be a complicated area, so others are best referred to their own

doctor +/- an oculoplastic or plastic surgeon.

Hardy

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of li.dawn

Sent: 14 December 2009 19:45

blepharophimosis

Subject: blepharophimosis Re: question

I don't know much about trans nasal wiring

either but I'd like to know the asnwer as well. What's the difference between

trans nasal wiring and canthoplasty in terms of opening up the inner corners of

the eyes? Under what condition is one precedure is prefered vs. the other?

Also, typically, at what age does this type of procedure is performed? Thanks

to anyone who can give some explanations.

, may I ask what doctor at which institution did your daughter see?

Thanks a lot.

Dawn

>

> I have a question. What is trans nasal wiring and why is it being done? I

haven't heard of this before and am interested to know about this. If you can

tell me anything that would be nice.

> By the way I haven't mailed you all in a while but my daughter is doing

great. She had her ptosis corrected last October and I am happy with the

results so far. We go back to see the Dr. at the end of this month to see how

he thinks she is doing. I hope you all are doing good and wish you luck on the

surgeries and the hard decisions you must make.

> Thanks

>

[Guest guest]

Kathy,

I am on plaquenil. I have been on it for 2 months. I'm not sure if it is working

right now. This is the only med that I have been on. I was just told I had RA a

few months ago. I also take Mobic twice a day for a total of 15mg. I don't think

I'm having any side effect from it. I am on 2 a day making a total of 400mg.

Cheli

[ ] Question

Hi All and I wish you all a very Merry Christmas.

My remy is wanting me to try Plaquenil ---I had requested we try the Minocin for

my RA which is not responding to any of the new bio medications. Has anyone

been on plaquenil?

Thanks, kathy egenbacher

[Guest guest]

Yes but I had to go off of it due to allergic reactions...

Sent from my iPhone

On Dec 16, 2009, at 7:35 PM, Kathy <egenbacher@...> wrote:

Hi All and I wish you all a very Merry Christmas.

My remy is wanting me to try Plaquenil ---I had requested we try the Minocin for

my RA which is not responding to any of the new bio medications. Has anyone been

on plaquenil?

Thanks, kathy egenbacher

Re: [ ] Enbrel

Hi ...I've been on enbrel since 2005 and its been wonderful for me. I

felt good right after injecting..within a few days...but it usually takes a

month or more. I have a friend that just went on it and she can feel herself

feeling better each day. I am also on prednisone 5 mg each day. this is

the best I have ever felt with my r/a.

Hope you get the same results .

Hugs..a in Ohio

[Guest guest]

Kathy,

I take Plaquenil,200mg.,twice a day, an have not had any bad reactions or

problems with it. I have taken it for over 10yrs. I also take MTX injections

once a week and 5mg Prednisone daily. This has held the progression of the RA

for me so far.

Tom g

[Guest guest]

Now I know what you meant when you said "thanks for not yelling". , you have to remember that when people write in all caps at larger print they usually have sight problems. This person writes me off list and always uses caps and larger print. I have a couple other people do that. Not everyone is a newbie and writes in caps just to be doing something--they write that way for vision reasons. So when I see a whole post in all caps I have to assume it's fixing a problem for them. And how hard is it for good sighted people to deal with a few posts this way? Probably easier for us than for them to constantly struggle to read the tiny print others post.

There are some people on various lists I'm on that their posts come through SO tiny that I have to get out my reading glasses to see what they are saying. Yet I have never asked them to stop posting like that. It's MY problem, not theirs. I have to assume they can see their posts just fine.

I wish my email client had the same ability that my web browser does. Click a couple buttons and the print automatically gets bigger. But it doesn't have that ability, and so I have to struggle with the smaller print.

Still, I don't make a fuss about it. I think you should not assume that because someone posts in all caps they are shouting.

I've seen comments like that before make the people stop posting all together. Not good. I'd rather someone felt comfortable enough to come in and offer suggestions, or ask questions in large print and all caps than to be embarrassed and go back to lurking.

Samala,

-------Original Message-------

, but please stop yelling.

--

Best regards,

[Guest guest]

Top-posting for obvious reasons...

, when I make comments like that (I wasn't mean, I simply asked

them not to yell), it is meant to educate.

Tell you what though... since you were so nice in your email to me, I'll

try extra hard to be nicer/more informative, rather than simply say

'stop yelling'...

Regardless - it is a simple fact that on the internet, all caps in an

email is considered yelling - a quick google reveals this all too well.

So, if that person isn't aware of it, now they are.

If their problem is they can't see/read their posts without their

glasses, then they need to use their glasses when posting, or use one of

those screen magnifiers if their vision is really bad - I can't

(see/read posts without my glasses), and I do (wear my glasses when on

the computer). I'm sorry if they feel it inconveniences them, but trying

to read a post in all caps is very difficult/inconvenient for most other

people (me included).

Consider the analogy of someone who needs a hearing aid to hear clearly

going into a library and trying to carry on a conversation with someone

without it, and ends up talking too loud because they can't hear their

self. Would you consider that acceptable? Or would you tell them to go

put on their hearing aid and whisper if they want to talk?

Anyway, 'nuff said...

On 2010-03-05 9:28 AM, wrote:

> There are some people on various lists I'm on that their posts come

> through SO tiny that I have to get out my reading glasses to see what

> they are saying. Yet I have never asked them to stop posting like

> that. It's MY problem, not theirs. I have to assume they can see their

> posts just fine.

>

> I wish my email client had the same ability that my web browser does.

> Click a couple buttons and the print automatically gets bigger. But it

> doesn't have that ability, and so I have to struggle with the smaller

> print.

>

> Still, I don't make a fuss about it. I think you should not assume that

> because someone posts in all caps they are shouting.

>

> I've seen comments like that before make the people stop posting all

> together. Not good. I'd rather someone felt comfortable enough to come

> in and offer suggestions, or ask questions in large print and all caps

> than to be embarrassed and go back to lurking.

--

[Guest guest]

Hey . I understand what you are saying. And education is always a good thing. And I know, and have known for a long time, that all caps is 'shouting'.

Thing is, and I guess this is just me personally, I try to accept everyone at their level of comfort. I have been in situations--such as your library one--where I have been 'inconvenienced' by loud talking by an older person who may--or may not--have a hearing aid. I wouldn't dream of walking up to them and asking them to be quieter. Same in the theater. I hate it when people talk, and when young people are in there laughing and joking I have asked them to be quiet.

Whereas with someone who you can tell talks back to the TV at home, or comments to their spouse while watching TV, and doesn't even realize you are not suppose to do that in a theater, I've kept quiet. And again, though I find it QUITE annoying, I would rather get up and move myself than embarrass them by asking them to stop talking.

That's just me. I'm perhaps far too sensitive to other people's feelings, having had mine hurt inappropriately at times.

So now, as you say, 'nuff said. :-)

Samala,

-------Original Message-------

Regardless - it is a simple fact that on the internet, all caps in an

email is considered yelling - a quick google reveals this all too well.

So, if that person isn't aware of it, now they are.

If their problem is they can't see/read their posts without their

glasses, then they need to use their glasses when posting, or use one of

those screen magnifiers if their vision is really bad - I can't

(see/read posts without my glasses), and I do (wear my glasses when on

the computer). I'm sorry if they feel it inconveniences them, but trying

to read a post in all caps is very difficult/inconvenient for most other

people (me included).

Consider the analogy of someone who needs a hearing aid to hear clearly

going into a library and trying to carry on a conversation with someone

without it, and ends up talking too loud because they can't hear their

self. Would you consider that acceptable? Or would you tell them to go

put on their hearing aid and whisper if they want to talk?

[Guest guest]

But ...

You're hurting ' feelings by admonishment, now...

Ne'mind... we ALL try to do that...

Chuck

Argue with yourself and LOSE???-- PROBLEM!!.

On 3/5/2010 1:32:28 PM, (gaiacita@...) wrote:

> Hey . I understand what you are saying. And education is always a

> good thing. And I know, and have known for a long time, that all caps is

> 'shouting'.

>

> Thing is, and I guess this is just me personally, I try to accept everyone

> at their level of comfort. I have been in situations--such as your library

> one--where I have been 'inconvenienced' by loud talking by an older person

> who may--or may not--have a hearing aid. I

> wouldn't dream of walking up to them and asking them to be quieter. Same in

the theater. I hate it when people talk, and when young people are in there

laughing and joking I have asked them to be quiet.

>

> Whereas with someone who you can tell talks back to the TV at home, or

comments to their spouse while watching TV, and doesn't

> even realize you are not suppose to do that in a theater,

> I've kept quiet. And again, though I find it QUITE annoying, I would rather

get up and move myself than embarrass them by asking them to stop talking.

>

> That's

> just me. I'm perhaps far too sensitive to other people's feelings, having

> had mine hurt inappropriately at times.

>

> So now, as you say,

> 'nuff said. :-)

>

> Samala,

>

>

> -------Original Messag