looking for info

[Guest guest]

hello list, i've received the e-mail below and thought

i'd pass it on. i'd be grateful if you could reply to

her directly. since this is more of a legal issue, i

can't really point her to the right direction, i know

next to nothing about the legal side of u.s.

matters...

thanx

claudia

--- MARCIE MCGRATH-WALL <smileurspecial@...>

wrote:

> Date: Wed, 28 Jul 1999 03:19:11 -0400

> From: MARCIE MCGRATH-WALL <smileurspecial@...>

> Organization: @Home Network Member

> claudiaayaz@...

> Subject: Looking for info

>

> Hello,

>

> I was hoping you could help me. I am going through

a nasty divorce and my husband lied in court and

> the judge has ordered me to vaccinate. My daughter

> had a reaction to

> the DTP shot with a screaming episode that included

> her back being

> arched and her arms out. Even though we decided

> together not to

> continue to vaccinate, he is using this against me

> to fight me for

> custody. I now have a medical exemption but this is

> not good enough for

> them. My divorce is going to be on the scale of a

> medical malpractice

> suit with us being in court for 2+ days and $1000s &

> $1000s of dollars.

> My daughter, Carson, is immunodeficient and the

> immunologist has clearly

> stated that it could be damaging to her to receive

> any more vaccines. I

> desperately need any info on immunodeficient

> children and vaccine

> damage. We are very lucky for now. Please help me

> save Carson and

> .

>

> Marcie McGrath-Wall

> smileurspecial@...

>

===

http://homepages.infoseek.com/~lovingdolphin1/geninfo.html silly verses

http://www.freeyellow.com/members6/saraavidolphin/index.html go holistic!

http://www.freeyellow.com/members6/saraavidolphin/page1.html channelings about

atlantis and today

icq 8082968 subscribe to NATURAL_PARENT,

/subscribe.cgi/natural_parent

_____________________________________________________________

[Guest guest]

Dear Charlette,

I have had asthma and allergies for 10 years now and I

am only 25. I have had 3 polypectomies and alot of

the same problems you have. One thing I have found

that helps is that I do salt water irrigations every

morning. I take a cup of water put some salt in it

and then suck some up of the salt water mixture into a

syringe and then sqirt it up each nostrol and blow it

out. It is quite disgusting but at this point you

have to go with what works. I am also allergic to

dust, cats and mold but I am convinced that any kind

of alcohol really aggrevates the situation. I know I

used to drink ALOT and now I only drink a little and

it seems to have improved some what. I just found

this group yesterday I am also trying to find out

about these low salicitate foods. Hang in there and

let me know if you find out anything.

a

--- charsue56 <charsue56@...> wrote:

> I am still up and I don't understand a lot of what

> has been written.

> If you are allergic to Ibuprofen, then

> possibly/probably salicylates

> in food too? I have never tested positive for

> anything but cats, dust

> and mold. I know that beer makes me wheeze the worst

> and wine next,

> so I have mostly given up drinking except the

> occasional tequila. No

> big loss, but wondering if I should get tested once

> again for food

> and where to find a list of stuff I should maybe

> avoid. And oh my

> gosh, I can see why polyps come back if you are

> allergic to all of

> this....Also, why are a lot of you on Singulair? I

> took it and

> Accolate and never felt a bit of difference, but

> that is interesting

> that it may slow or stop polyp regrowth? Now I am

> really tired,

> Charlotte

>

>

__________________________________________________

[Guest guest]

An easier alternative to a syringe for irrigation is

the Sinus Rinse bottle. I've been using it since the

beginning of the year and it works great. You can

find them at www.nasalrinse.com or www.neilmed.com.

You can mix your own solution. 1/4 teaspoon of kosher

salt (I assume so there isn't iodine) with 1/4 tsp

baking soda. If your water isn't good (like well

water), buy distilled water, otherwise tap water is OK

(this is per my Dr.)

Jim Mayo

--- a Cerf <cerfe@...> wrote:

> Dear Charlette,

> I have had asthma and allergies for 10 years now and

> I

> am only 25. I have had 3 polypectomies and alot of

> the same problems you have. One thing I have found

> that helps is that I do salt water irrigations every

> morning. I take a cup of water put some salt in it

> and then suck some up of the salt water mixture into

> a

> syringe and then sqirt it up each nostrol and blow

> it

> out. It is quite disgusting but at this point you

> have to go with what works. I am also allergic to

> dust, cats and mold but I am convinced that any kind

> of alcohol really aggrevates the situation. I know

> I

> used to drink ALOT and now I only drink a little and

> it seems to have improved some what. I just found

> this group yesterday I am also trying to find out

> about these low salicitate foods. Hang in there and

> let me know if you find out anything.

> a

> --- charsue56 <charsue56@...> wrote:

> > I am still up and I don't understand a lot of what

> > has been written.

> > If you are allergic to Ibuprofen, then

> > possibly/probably salicylates

> > in food too? I have never tested positive for

> > anything but cats, dust

> > and mold. I know that beer makes me wheeze the

> worst

> > and wine next,

> > so I have mostly given up drinking except the

> > occasional tequila. No

> > big loss, but wondering if I should get tested

> once

> > again for food

> > and where to find a list of stuff I should maybe

> > avoid. And oh my

> > gosh, I can see why polyps come back if you are

> > allergic to all of

> > this....Also, why are a lot of you on Singulair? I

> > took it and

> > Accolate and never felt a bit of difference, but

> > that is interesting

> > that it may slow or stop polyp regrowth? Now I am

> > really tired,

> > Charlotte

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Charlotte - I hope you finally got some sleep!

You've got it bad haven't you? I hope your pain has subsided a bit

by now. I've just started on Singulair - officially to help control

my asthma (which isn't too bad at the moment), but I'm hoping that it

will stop my polyps from coming back too fast and ..... best of all,

might help restore my sense of smell/taste. I'm still on 10mg a day

until I hear from anyone who has safely upped their dose to 20mg a

day. I've been religiously washing out my nose with salt water

morning and night - and it certainly feels better for a while each

time.

Today I had a letter from my chest consultant who has arranged for me

to see a dietician in a couple of weeks. They suggest I would be

most likely to benefit from a sulphite free diet rather than

salicylate free (I suspect the permitted foods will be very similar,

but haven't investigated yet)

Anyway, welcome all new sufferers - there is definitely comfort in

numbers!

Take care and keep your fingers crossed

Ali

> I am still up and I don't understand a lot of what has been

written.

> If you are allergic to Ibuprofen, then possibly/probably

salicylates

> in food too? I have never tested positive for anything but cats,

dust

> and mold. I know that beer makes me wheeze the worst and wine next,

> so I have mostly given up drinking except the occasional tequila.

No

> big loss, but wondering if I should get tested once again for food

> and where to find a list of stuff I should maybe avoid. And oh my

> gosh, I can see why polyps come back if you are allergic to all of

> this....Also, why are a lot of you on Singulair? I took it and

> Accolate and never felt a bit of difference, but that is

interesting

> that it may slow or stop polyp regrowth? Now I am really tired,

> Charlotte

[Guest guest]

I don't know if one is enough, but I am on 20 milligrams a day of Singulair and

it's very safe and wonderful --

have you read my other posts about it???

I sometimes even take more. I am AMAZED at the effects it has and my doctor

assured me that they studied it up to 50 milligrams long term and 100 milligrams

short term and it was fine....

Good luck

Lori

[Guest guest]

Lori,

Does your insurance cover that dosage of singular? If not, what does it

cost? I am thinking of asking my doc to give me a prescription for the 20mg

dose (I am on 10mg now) to try to keep the polyps from growing so fast....I

am so damn tired of surgery so often. I also thought about asking if there

are any trials that I can volunteer for to get even more careful

monitoring...does anyone know if there are any going on in the US?

I read articles from Italy that talk about this kind of drug for polyps as

well as asthma.

Also, has anyone been told how we can get an allergy to aspirin (for me it

was ibuprophin that sent me to the hospital in shock) so late in life? I

was also in my 30's before I developed this allergy.

Kim

At 03:06 PM 7/24/2002 -0400, you wrote:

>I don't know if one is enough, but I am on 20 milligrams a day of

>Singulair and it's very safe and wonderful --

>

>have you read my other posts about it???

>

>I sometimes even take more. I am AMAZED at the effects it has and my

>doctor assured me that they studied it up to 50 milligrams long term and

>100 milligrams short term and it was fine....

>

>Good luck

>

>Lori

>

>

>

>

>

[Guest guest]

My insurance does cover the Singulair in any amount of pills my doc prescribes

per month.

I don't think there are any clinical trials right now in the US for this.

Lori

[Guest guest]

I took aspirin/ibuprofen all of my life until I was in my early thirties. I used to get really bad asthma attacks on Sunday mornings and I could not figure out why. Then I realized that I usually spent Saturday doing a bunch of work around the house so Sunday morning I would take some ibuprofen for the muscle pain.

No one has ever given me a reason. I guess if we knew why then we might not be having all of these problems.

Rob

Re: Re: looking for info

Lori,Does your insurance cover that dosage of singular? If not, what does it cost? I am thinking of asking my doc to give me a prescription for the 20mg dose (I am on 10mg now) to try to keep the polyps from growing so fast....I am so damn tired of surgery so often. I also thought about asking if there are any trials that I can volunteer for to get even more careful monitoring...does anyone know if there are any going on in the US?I read articles from Italy that talk about this kind of drug for polyps as well as asthma.Also, has anyone been told how we can get an allergy to aspirin (for me it was ibuprophin that sent me to the hospital in shock) so late in life? I was also in my 30's before I developed this allergy.KimAt 03:06 PM 7/24/2002 -0400, you wrote:>I don't know if one is enough, but I am on 20 milligrams a day of >Singulair and it's very safe and wonderful -->>have you read my other posts about it???>>I sometimes even take more. I am AMAZED at the effects it has and my >doctor assured me that they studied it up to 50 milligrams long term and >100 milligrams short term and it was fine....>>Good luck>>Lori>>>>>

[Guest guest]

My doctor's office in Houston conveniently destroyed my x-rays after

10 years (I was livid), but I was able to get a copy of the complete

file including surgery notes and a before and after x-ray comparison

copied onto paper.

, aren't they required by law to disclose records to you? My

husband's a lawyer and thinks they are.....

Anyway good luck gathering all your stuff, don't give up to easy!

M.

[Guest guest]

-

I'm sure the law does require the records be disclosed (to the patient

or his authorized rep, etc.) - it's just that sometimes with old records, it

can be hard to find out who actually has them in their possession.

mary

Re: looking for info

My doctor's office in Houston conveniently destroyed my x-rays after

10 years (I was livid), but I was able to get a copy of the complete

file including surgery notes and a before and after x-ray comparison

copied onto paper.

, aren't they required by law to disclose records to you? My

husband's a lawyer and thinks they are.....

Anyway good luck gathering all your stuff, don't give up to easy!

M.

[Guest guest]

Michele, I always had seizures a couple days before my menstrual

cycle. I don't have them that ofter anymore. My flax vitamins have

helped me alot. They have a cream out that has to me perscribed my

the doctor. It is a natural progesterone cream that was given to

people that are low on progesterone at around the time of their

period. It is either a drug study right now or you can get it with a

perscription. I know it was offered to me at one time and I didn't

take it for it was a drug study at that time. So I don't know if it

is or not at this time. You would have to ask her doctor. Our bodies

change around the time of our menstrual cycle. So who knows maybe

she needs a new change of meds too. That is what happened to me when

I was young and going through that.

> Hello,

> I don't often post on this list but am looking for some

information.

> I have an 18yr old daugher who is being treated by a DAN! doctor.

In

> the past she was given an EEG looking for seizures but no

seizure/per

> se were found. This EEG was supposed to have been a sleep EEG but

> she could not sleep so the EEG was stopped. She used to have

staring

> eposiodes but most of these have stopped since bio-med

treatments.

> Due to some problems lately surrounding her menstral cycles, it

was

> mentioned that she may be having catamenial seizures. I am

wondering

> if anyone could give me some information on this, how it is dx'd

and

> treatments which may have worked.

> Thanks,

> Michele

[Guest guest]

Thank you ,

Are your flax vitamins just flax seed oil?

Michele

> > Hello,

> > I don't often post on this list but am looking for some

> information.

> > I have an 18yr old daugher who is being treated by a DAN!

doctor.

> In

> > the past she was given an EEG looking for seizures but no

> seizure/per

> > se were found. This EEG was supposed to have been a sleep EEG

but

> > she could not sleep so the EEG was stopped. She used to have

> staring

> > eposiodes but most of these have stopped since bio-med

> treatments.

> > Due to some problems lately surrounding her menstral cycles, it

> was

> > mentioned that she may be having catamenial seizures. I am

> wondering

> > if anyone could give me some information on this, how it is dx'd

> and

> > treatments which may have worked.

> > Thanks,

> > Michele

[Guest guest]

,

One way to find out if she is havig catamenial seizurse is by keeping a

record of when she has her period and the seizurse. Catamenial seizures

can come before during and after her period but you should be able to see

a pattern and if she indeed has catamenial seizures there is an AED

specifically for that but I don't remember the name of that med, but I'm

sure someone here can tell you what it is. I have that info on my

computer but my computer is currently being worked on, I can get it for

you when I get my computer back, but I don't know when that will be,

hopefully soon or you can ask your doc about it. Good Luck!

Grace

On Thu, 13 May 2004 14:50:54 -0000 " zookpr56 " <Mcro99@...> writes:

> Hello,

> I don't often post on this list but am looking for some information.

>

> I have an 18yr old daugher who is being treated by a DAN! doctor.

> In

> the past she was given an EEG looking for seizures but no

> seizure/per

> se were found. This EEG was supposed to have been a sleep EEG but

> she could not sleep so the EEG was stopped. She used to have

> staring

> eposiodes but most of these have stopped since bio-med treatments.

>

> Due to some problems lately surrounding her menstral cycles, it was

>

> mentioned that she may be having catamenial seizures. I am

> wondering

> if anyone could give me some information on this, how it is dx'd and

>

> treatments which may have worked.

> Thanks,

> Michele

>

>

>

>

[Guest guest]

Thanks can you tell me what an AED is?

Michele

> ,

>

> One way to find out if she is havig catamenial seizurse is by

keeping a

> record of when she has her period and the seizurse. Catamenial

seizures

> can come before during and after her period but you should be able

to see

> a pattern and if she indeed has catamenial seizures there is an AED

> specifically for that but I don't remember the name of that med,

but I'm

> sure someone here can tell you what it is. I have that info on my

> computer but my computer is currently being worked on, I can get it

for

> you when I get my computer back, but I don't know when that will be,

> hopefully soon or you can ask your doc about it. Good Luck!

> Grace

>

>

> On Thu, 13 May 2004 14:50:54 -0000 " zookpr56 " <Mcro99@a...> writes:

> > Hello,

> > I don't often post on this list but am looking for some

information.

> >

> > I have an 18yr old daugher who is being treated by a DAN!

doctor.

> > In

> > the past she was given an EEG looking for seizures but no

> > seizure/per

> > se were found. This EEG was supposed to have been a sleep EEG

but

> > she could not sleep so the EEG was stopped. She used to have

> > staring

> > eposiodes but most of these have stopped since bio-med

treatments.

> >

> > Due to some problems lately surrounding her menstral cycles, it

was

> >

> > mentioned that she may be having catamenial seizures. I am

> > wondering

> > if anyone could give me some information on this, how it is dx'd

and

> >

> > treatments which may have worked.

> > Thanks,

> > Michele

> >

> >

> >

> >

[Guest guest]

seizure medicine

> > ,

> >

> > One way to find out if she is havig catamenial seizurse is by

> keeping a

> > record of when she has her period and the seizurse. Catamenial

> seizures

> > can come before during and after her period but you should be

able

> to see

> > a pattern and if she indeed has catamenial seizures there is an

AED

> > specifically for that but I don't remember the name of that med,

> but I'm

> > sure someone here can tell you what it is. I have that info on

my

> > computer but my computer is currently being worked on, I can get

it

> for

> > you when I get my computer back, but I don't know when that will

be,

> > hopefully soon or you can ask your doc about it. Good Luck!

> > Grace

> >

> >

> > On Thu, 13 May 2004 14:50:54 -0000 " zookpr56 " <Mcro99@a...>

writes:

> > > Hello,

> > > I don't often post on this list but am looking for some

> information.

> > >

> > > I have an 18yr old daugher who is being treated by a DAN!

> doctor.

> > > In

> > > the past she was given an EEG looking for seizures but no

> > > seizure/per

> > > se were found. This EEG was supposed to have been a sleep EEG

> but

> > > she could not sleep so the EEG was stopped. She used to have

> > > staring

> > > eposiodes but most of these have stopped since bio-med

> treatments.

> > >

> > > Due to some problems lately surrounding her menstral cycles,

it

> was

> > >

> > > mentioned that she may be having catamenial seizures. I am

> > > wondering

> > > if anyone could give me some information on this, how it is

dx'd

> and

> > >

> > > treatments which may have worked.

> > > Thanks,

> > > Michele

> > >

> > >

> > >

> > >

[Guest guest]

Michele I couldn't deal with the taste of the oil mixed with

cottage cheese. I just buy vitamin capsules that are filled with the

flax oil inside. I do sometimes use the flaxseeds grinded when I

remember.

> > > Hello,

> > > I don't often post on this list but am looking for some

> > information.

> > > I have an 18yr old daugher who is being treated by a DAN!

> doctor.

> > In

> > > the past she was given an EEG looking for seizures but no

> > seizure/per

> > > se were found. This EEG was supposed to have been a sleep EEG

> but

> > > she could not sleep so the EEG was stopped. She used to have

> > staring

> > > eposiodes but most of these have stopped since bio-med

> > treatments.

> > > Due to some problems lately surrounding her menstral cycles,

it

> > was

> > > mentioned that she may be having catamenial seizures. I am

> > wondering

> > > if anyone could give me some information on this, how it is

dx'd

> > and

> > > treatments which may have worked.

> > > Thanks,

> > > Michele

[Guest guest]

,

Anti Epileptic Drug

Grace

On Fri, 14 May 2004 01:38:47 -0000 " zookpr56 " <Mcro99@...> writes:

> Thanks can you tell me what an AED is?

> Michele

>

>

> > ,

> >

> > One way to find out if she is havig catamenial seizurse is by

> keeping a

> > record of when she has her period and the seizurse. Catamenial

> seizures

> > can come before during and after her period but you should be able

>

> to see

> > a pattern and if she indeed has catamenial seizures there is an

> AED

> > specifically for that but I don't remember the name of that med,

> but I'm

> > sure someone here can tell you what it is. I have that info on

> my

> > computer but my computer is currently being worked on, I can get

> it

> for

> > you when I get my computer back, but I don't know when that will

> be,

> > hopefully soon or you can ask your doc about it. Good Luck!

> > Grace

> >

> >

> > On Thu, 13 May 2004 14:50:54 -0000 " zookpr56 " <Mcro99@a...>

> writes:

> > > Hello,

> > > I don't often post on this list but am looking for some

> information.

> > >

> > > I have an 18yr old daugher who is being treated by a DAN!

> doctor.

> > > In

> > > the past she was given an EEG looking for seizures but no

> > > seizure/per

> > > se were found. This EEG was supposed to have been a sleep EEG

> but

> > > she could not sleep so the EEG was stopped. She used to have

> > > staring

> > > eposiodes but most of these have stopped since bio-med

> treatments.

> > >

> > > Due to some problems lately surrounding her menstral cycles, it

>

> was

> > >

> > > mentioned that she may be having catamenial seizures. I am

> > > wondering

> > > if anyone could give me some information on this, how it is dx'd

>

> and

> > >

> > > treatments which may have worked.

> > > Thanks,

> > > Michele

> > >

> > >

> > >

> > >

[Guest guest]

Hi Jannie!

Most people end up getting a laparoscopic heller myotomy (the other option

is pneumatic dilation.) It has a high success rate, and the vast majority

of people would do it again if given the option of a " do over " in life.

There is a tremendous amount of information available in this website -- I

highly recommend reading as much as possible (particularly the articles in

the Links section) -- only by learning as much as possible about the

disease and the treatments available can you make the best decision for

your own personal situation.

Please also read this " welcome message " which has lots of information

about how to get the most out of this group:

achalasia/message/16021

My main suggestion right now is to make sure that your GI and your surgeon

are HIGHLY EXPERIENCED in treating achalasia. There's a lot of new

information out there that only true specialists are going to be aware of.

If your surgeon hasn't done dozens and dozens of Heller Myotomies, I would

go to a different surgeon. (If you let us know what region you live in,

we may be able to recommend a specialist -- or you can check the list of

doctors in the Database section.)

Welcome to the group!

Debbi in Michigan

> Hi! I'm new to the group. Just joined today, so I thought I would

> introduce myself.

>

> I was diagnosed with Achalasia four years ago. My doctor put me on

> Nifedipine and it was working wonderfully up until about 3 months ago,

> when I suddenly started having a lot of problems keeping things down.

> I've lost 10-15 pounds already and now he's recommending the laparascopic

> myotomy.

>

> ly, I'm nervous about the idea and was hoping you guys might be able

> to tell me if this procedure is really worth it. Has anyone out there had

> it? Did it help? Did you have a lot of complications? What kinds of

> questions do you think I should ask the surgeon before deciding if it's

> right for me?

>

> I'd really appreciate the help.

>

> Thanks,

> Jannie

[Guest guest]

Jannie - welcome to the group. Lots of us have had the myotomy...most successfully. I had mine on 4/19/04. Today I ate a donut with nothing to wash it down!!!! I can eat almost anything, usually with a cup of water. It stays down & I have no regrets about the surgery at all. Be sure to find a very, very qualified surgeon. Best Wishes, Cindi in PA

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Thanks, Cindi. After hearing from you and others on the list I'm feeling more confident about having the myotomy. I'm still waiting on a surgical referral from doctor and hoping there's someone around here who has a lot of experience with this procedure. (I live in the Hampton Roads area of Virginia.)

Take care,

Jannie

Re: Looking For Info

Jannie - welcome to the group. Lots of us have had the myotomy...most successfully. I had mine on 4/19/04. Today I ate a donut with nothing to wash it down!!!! I can eat almost anything, usually with a cup of water. It stays down & I have no regrets about the surgery at all. Be sure to find a very, very qualified surgeon. Best Wishes, Cindi in PA

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

<<Hi there. I am looking for info on 2-phenoxyethanol..something more

substantial than I have found which is " it is antifreeze " .does anyone

have anything on this substance as used as preservative (I assume) in

Glaxo's European marketed 5 in 1 DTaP/IPV/Hib? >>

Try looking up Phenol. That's what it is. It causes kidney damage. If

you ever get a chance ask Eli Lilly why they put it in insulin, don't

diabetics have enough problems with their kidneys? (I'm just kidding

about asking them, it's a sore spot with me.) I think I've got the MSDS

(Material Safety Data Sheet) on it if you want it. It's long and parts

are hard to read because of the technical jargon. Let me know if you

want it and I'll send it off list.

Ohio

My auctions at eBay - http://tinyurl.com/53lys

)0(~~~)0(~~~)0(

Mom to Brittany, born 8/31/93, dx'd-IDDM 5/28/01; , born 6/28/97;

and Shayna, born 6/1/00.

Vaccine free since 1999! See our site and get more vaccine info at

http://www.loonatics-fringe.com

For Ohio specific Vaccine Info - http://groups.msn.com/OhioVaxInfo/

[Guest guest]

I once asked my doctor that same question. He said loss of hearing

and/or fever. My doctor says he will be closely monitoring my hearing

for years after surgery.

Missy

>

> Just curious, what are the symptoms of a reacuring (sp) C-toma

> because the only symptoms i had before were a loss of

> hearing.So i have nothing to reference. I have had 1 surgery to

> remove it all ready and am waiting for the corrective surgery in

> Feb. Iam swimming and doing everything as normal minus

> hearing in my right ear. I actually have become acustomed to it.

> (Not hearing in one ear that is)Iam missing one of the bones

> behind my ear drum, so i realize my hearing will not improve until

> then. What should i be mindful of?

> Any info would be appreciated

> Thx

>

> BC

> Canada

[Guest guest]

The test is an Arterial Blood Gas (ABG) test. What is important to measure

with this test is NOT the oxygen level in your blood, but instead, the carbon

dioxide level...or CO2. Folks who have SMA lack the pulmonary strength to push

CO2 out of our lungs so it accumulates in our arterial blood...especially when

we are sleeping. Our CO2 levels tend to rise to the highest levels then, as

our bodies relax and our breathing becomes more shallow. A sleep study...which

includes a couple of ABG test....most accurately detects problems. Ask your

primary doctor to refer you to a pulmonist. Most of them understand the

intricacies of SMA.

Vicki

**************One site keeps you connected to all your email: AOL Mail,

Gmail, and Mail. The NEW

AOL.com.(http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom0\

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[Guest guest]

Thank you so much for this information. I'll definitely bring it with me to

the appointment with my pulmonary specialist.

Karyna

_____

From: [mailto: ] On

Behalf Of VickiLJurney@...

Sent: Thursday, December 11, 2008 1:21 PM

Subject: Re: Looking for info

The test is an Arterial Blood Gas (ABG) test. What is important to measure

with this test is NOT the oxygen level in your blood, but instead, the

carbon

dioxide level...or CO2. Folks who have SMA lack the pulmonary strength to

push

CO2 out of our lungs so it accumulates in our arterial blood...especially

when

we are sleeping. Our CO2 levels tend to rise to the highest levels then, as

our bodies relax and our breathing becomes more shallow. A sleep

study...which

includes a couple of ABG test....most accurately detects problems. Ask your

primary doctor to refer you to a pulmonist. Most of them understand the

intricacies of SMA.

Vicki

**************One site keeps you connected to all your email: AOL Mail,

Gmail, and Mail. The NEW

AOL.com.(http://www.aol.

<http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000

019> com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000019)

[Guest guest]

K all. Went to my pain care clinic appointment today and was given a " Tens

Impulse 2000 unit " I am a totally broke person right now inches away from

living in a tent (well, not that bad but close) so am on Medicaid (long story).

I have NERVE damage. I am not really sure how to use this thing or when. I

dunno. I had an appointment this morning and asked about injections (epidurals)

and what not.

I would please like info on how others are using them and when and how.

The " mind " is a very strange place. Today, during my appointment, after saying

my back/body wasn't feeling that bad enough to go the injections routine as of

yet, when I got home, I had the worst day ever I have had in about two years. I

was in agony. To the point where I wanted to throw up... cept I hadn't eaten

anything. I NEED to do something. My subconscious mind is against injections for

some reason. I do not have a thing against needles... I dunno. Something inside

me says they are gonna " poke " in the wrong place. Or for the wrong reason.... I

really do not know.

Has anyone had any luck writing to a Doctor? I wish to write to a Dr. Kerr at

the Mayo Clinic in Baltimore. How do you get through to them? I guess all I can

do is try. He is the leading TM Doc I guess in the country. I know my PCP thinks

I am just plain " nuts " . Anyway, I have " yakked " enough as it is.

Wishing everybody a great weekend. in NH