New here

[Guest guest]

Could be caused by smoking. They say that may be the reason I have it.

Marsha/nyc

[Guest guest]

they told you yours is caused by smoking??? My Dr said didn't really say. Guess that is why I'm off to the specialist.

my mom they told her it was probably caused by a bad case of childhood pneumonia. She's never smoked.

Her bother coughs alot too and he's a ex-smoker. We are trying to figure out if its tertiary. But out of the family its only her me and her bother.

Do you have a puffer??? my mom does plus she has to do certain exercises to get the stuff up.

I don't cough up anything. (yea) but dr said I do have liquid sitting on my lungs at the moment.

Debbie

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of marsha granvilleSent: Wednesday, November 29, 2006 1:58 AMTo: bronchiectasis Subject: Re: new here

Could be caused by smoking. They say that may be the reason I have it.Marsha/nyc

[Guest guest]

I've just been to the lung Dr and he said I may ??? have Alpha 1 antitrypin.

what is that????? (I am about to look it up)

I go for testing and to have my lungs drained next Thursday.

what do you do for all of this???

Debbie

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Sunniesback55@...Sent: Thursday, December 07, 2006 7:45 AMTo: bronchiectasis Subject: Re: new here

they told you yours is caused by smoking??? My Dr said didn't really say. Guess that is why I'm off to the specialist.

my mom they told her it was probably caused by a bad case of childhood pneumonia. She's never smoked.

Her bother coughs alot too and he's a ex-smoker. We are trying to figure out if its tertiary. But out of the family its only her me and her bother.

Do you have a puffer??? my mom does plus she has to do certain exercises to get the stuff up.

I don't cough up anything. (yea) but dr said I do have liquid sitting on my lungs at the moment.

My Bronchiactasis came on as a secondary condition caused by Alpha1 Antitrypsin Deficiency.

Sandie in MD

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

I've just been to the lung Dr and he said I may ??? have Alpha 1 antitrypin.

what is that????? (I am about to look it up)

I go for testing and to have my lungs drained next Thursday.

what do you do for all of this???

Debbie

Debbie

I was dx'd w/Alpha1 Antitrypsin Deficiency in 1998. This is a ' genetic ' disorder of the liver/lung.

Our livers retain an enzyme called ' antitrypsin'. due to this fact we develop lung symptoms, since this particular enzyme is responsible for healthy lung function.

As a result of the deficiency in this enzyme, most of us are infused weekly with an enzyme replacement therapy. the original treatment is known as Prolastin. there's also two others on the market now, zimira and aralast. i prefer the good ole original. been using it for going on 7 years now with no problems.

here's two websites to help you w/your questions. please take the time to view these sites..ask questions..i can help you there..if in fact your serum level tests come back positive for A1AD, contact me. I can put you in touch with the Alpha1 Foundation as well as our national and international support group list..I've been with them for 6 years

oh p.s. alpha1 is NOT a death sentence..it's a chronic, progressive, genetic disorder..and it's manageable..please let me know about your serum level results when you get them back..

Sandie in MD

A1AD ZZ

www.alpha2alpha.net

http://www.alphanetbfrg.org/Login.aspx

www.alpha1advocacy.org

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

yes I'll let you know my results. I go to the Dr on the 21st.

how do you get "infused" ???? its weekly???

The Dr said if I have to ,, its hard to get the government to pay for it. ??

thank you

Deb..one step at a time. Get tested first. If in fact you do need infusions..there's a lot of help. I am permanently disabled. Here in the states, I'm on Social Security Disability and have Medicare. They pay for my infusions 100% and this stuff is very very costly. But we have a ton of information and support, in the event you need it..let's hope you're serum levels are good..

Sandie in MD

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

yes I'll let you know my results. I go to the Dr on the 21st.

how do you get "infused" ???? its weekly???

The Dr said if I have to ,, its hard to get the government to pay for it. ??

thank you

Debbie./Canada

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Sunniesback55@...Sent: Friday, December 08, 2006 12:42 AMTo: bronchiectasis Subject: Re: new here

I've just been to the lung Dr and he said I may ??? have Alpha 1 antitrypin.

what is that????? (I am about to look it up)

I go for testing and to have my lungs drained next Thursday.

what do you do for all of this???

Debbie

Debbie

I was dx'd w/Alpha1 Antitrypsin Deficiency in 1998. This is a ' genetic ' disorder of the liver/lung.

Our livers retain an enzyme called ' antitrypsin'. due to this fact we develop lung symptoms, since this particular enzyme is responsible for healthy lung function.

As a result of the deficiency in this enzyme, most of us are infused weekly with an enzyme replacement therapy. the original treatment is known as Prolastin. there's also two others on the market now, zimira and aralast. i prefer the good ole original. been using it for going on 7 years now with no problems.

here's two websites to help you w/your questions. please take the time to view these sites..ask questions..i can help you there..if in fact your serum level tests come back positive for A1AD, contact me. I can put you in touch with the Alpha1 Foundation as well as our national and international support group list..I've been with them for 6 years

oh p.s. alpha1 is NOT a death sentence..it's a chronic, progressive, genetic disorder..and it's manageable..please let me know about your serum level results when you get them back..

Sandie in MD

A1AD ZZ

www.alpha2alpha.net

http://www.alphanetbfrg.org/Login.aspx

www.alpha1advocacy.org

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

I've been reading up on the drugs... so here is my stuiped question.. if this is a weekly thing and a heathcare provider must admin it.. how does one go on vacations???? I love to travel to ie/Mexico etc.

Can you give this to yourself???? what happens if something goes wrong??

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Sunniesback55@...Sent: Friday, December 08, 2006 12:42 AMTo: bronchiectasis Subject: Re: new here

I've just been to the lung Dr and he said I may ??? have Alpha 1 antitrypin.

what is that????? (I am about to look it up)

I go for testing and to have my lungs drained next Thursday.

what do you do for all of this???

Debbie

Debbie

I was dx'd w/Alpha1 Antitrypsin Deficiency in 1998. This is a ' genetic ' disorder of the liver/lung.

Our livers retain an enzyme called ' antitrypsin'. due to this fact we develop lung symptoms, since this particular enzyme is responsible for healthy lung function.

As a result of the deficiency in this enzyme, most of us are infused weekly with an enzyme replacement therapy. the original treatment is known as Prolastin. there's also two others on the market now, zimira and aralast. i prefer the good ole original. been using it for going on 7 years now with no problems.

here's two websites to help you w/your questions. please take the time to view these sites..ask questions..i can help you there..if in fact your serum level tests come back positive for A1AD, contact me. I can put you in touch with the Alpha1 Foundation as well as our national and international support group list..I've been with them for 6 years

oh p.s. alpha1 is NOT a death sentence..it's a chronic, progressive, genetic disorder..and it's manageable..please let me know about your serum level results when you get them back..

Sandie in MD

A1AD ZZ

www.alpha2alpha.net

http://www.alphanetbfrg.org/Login.aspx

www.alpha1advocacy.org

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

Dear Debbie, My doctors have been known to argue with the government that it will cost more to hospitalise me than to provide the medications. This arguement has been helpful, and hope it might help in your case. Hugs;0) Liz Sunniesback55@... wrote: In a message dated 12/8/2006

11:03:12 P.M. Eastern Standard Time, debres@... writes: yes I'll let you know my results. I go to the Dr on the 21st. how do you get "infused" ???? its weekly???

The Dr said if I have to ,, its hard to get the government to pay for it. ?? thank you Deb..one step at a time. Get tested first. If in fact you do need infusions..there's a lot of help. I am permanently disabled. Here in the states, I'm on Social Security Disability and have Medicare. They pay for my infusions 100% and this stuff is very very costly. But we have a ton of information and support, in the event you need it..let's hope you're serum levels are good.. Sandie in MD Never Look Down on SomeoneUnless You're Gonna Help Them Upe-mail:maryholt12@... or lungsformary@...Pre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you!:0)carepages.com name:maryelizabethholt:o) "Miracles happen with love....." ..... Please support your local children's hospital.... and "Give with all your might!"

http://iwkfoundation.org/ )Visit.... Children's Miracle Network.... http://www.cmn.org/ )"I don't give in, I don't give up, and I don't take no for an answer." ~Doris ~

Ask a question on any topic and get answers from real people. Go to Yahoo! Answers.

[Guest guest]

I've been reading up on the drugs... so here is my stuiped question.. if this is a weekly thing and a heathcare provider must admin it.. how does one go on vacations???? I love to travel to ie/Mexico etc.

Can you give this to yourself???? what happens if something goes wrong??

ok..I'm not quite sure what you're referring to here, but I'm gonna step out on a limb and assume you're referring to the weekly IV treatments of (in my case ) Prolastin.

A few years back when Prolastin was being manufactured by Bayer Direct, it was routine for them to shut down their plant once a year to do inventory, maintenance and so forth. So..during that time, those of us being infused with Prolastin would start stockpiling for the weeks our prolastin deliveries were put on hold.

We'd infuse every other week instead of weekly. Yes..our serum levels would drop..but it wasn't a danger to us and it was only a temporary thing. So, it was ok.

One doesn't have to put their life on hold because of their weekly treatments. It's ok to skip a week, but I wouldn't suggest skipping two weeks.

We manage our illness..our illness doesn't manage us...remember that.

What do you mean..' what if something goes wrong? "...

Sandie in MD

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

Hi Debbie, Is this a kind of med that you would be able to learn to infuse on your own or does it require monitoring by a nurse? Please ask your doctor if this might be a possibility. If so, he might allow you to take meds and all on your trip. Hugs:0) Liz e-mail:maryholt12@... or lungsformary@...Pre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you!:0)carepages.com name:maryelizabethholt:o) "Miracles happen with love....." ..... Please support your local children's hospital.... and "Give with all your might!" http://iwkfoundation.org/ )Visit.... Children's Miracle Network.... http://www.cmn.org/ )"I don't give in, I don't give up, and I don't take no for an answer."

~Doris ~

All new Yahoo! Mail -

Get a sneak peak at messages with a handy reading pane.

[Guest guest]

Hi Debbie,

Is this a kind of med that you would be able to learn to infuse on your own or does it require monitoring by a nurse? Please ask your doctor if this might be a possibility. If so, he might allow you to take meds and all on your trip.

Hugs:0)

Liz

Actually, yes. they can train you to self infuse..but I could never stick that cathetar in my veins..I know some do though..

Sandie

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

Hi everyone,

I've just been diagnosed with TCS. I'm having

bladder pressure readings that are high, some bladderleakage,

neuropathy everywhere, weakness in my legs, and episodes of very

severe back pain. I can't walk very far without my legs getting weak,

my feet hurting like crazy, so I've started using a wheelchair part of

the time.

What I'm wondering about is how this progresses.

What is the worse case scenerio, if surgery is

not possible?

My ortho.surgeon says that I am not a surgical

candidate because of osteoporosis. The cord ends at the bottom of

L3. And I don't know yet what kind of tether it is.

I'm 57 and have had these symptoms for 15 years, and this new ortho.

just found it. Thank god he kept looking until he found it.

I also have fibro, degenerative disc disease and some stenosis and I

think that has masked the other symptoms and is the reason my former

doctors never looked any deeper.

Do you have any links that will detail the progression, so I have

some idea of what I am facing?

Maureen

[Guest guest]

Maureen

Sorry to hear about the rough time you've been having.

The osteoporosis should not usually limit your ability to have tsc surgery.

It is not optimal to have osteoporosis with any surgery but it can certainly

be addressed and managed. If the lack of treatment of tsc hinders your

mobility, the osteoporosis could get worse from your bones not working

enough. ARe you on osteoporosis meds?

It is highly possible that alot of your lower body " fibro symptoms " are from

tsc or combination of both, you can certainly have a lot of pain from tsc

that could be interpreted as fibro and viceversa. Like alot of people have

mentioned here, as far as potential benefits from surgery, think about

function issues and how much you might have lost over the last years.

If the cord just ends low without any lipoma then it is probably tight

fillum terminale that actually is the least complicated surgery with the

more likely chance of good outcome. Having said that, of course the fact

that this may have been going on for a long time makes recovery of function

harder. It does sound be your description that some of the problems may be

more recent though.

I had my surgery at 37 for tight fillum and it was well worth it. I can't

run or swim freestyle as I'd like too but I can do alot more and participate

in most of the things I'd too, I work, shop, cook, etc...stuff I could

barely do on a good day before surgery. And, the pain is definitely much

better.

What area are you in?

If you are seriuosly considering surgery you might want to talk to a few

more surgeons to see if they feel you are a candidate. Most adult

neurosurgeons have little or no experience in tsc so you really want to try

to find someone interested/experienced in tsc as it is not usually an adult

diagnosis. I had to see 6-7 before I found one that would even consider the

diagnosis and go ahead and operate.

Best wishes

>

>Reply-To: tetheredspinalcord

>To: tetheredspinalcord

>Subject: New here

>Date: Mon, 16 Jul 2007 14:32:06 -0000

>

>Hi everyone,

>

>I've just been diagnosed with TCS. I'm having

>bladder pressure readings that are high, some bladderleakage,

>neuropathy everywhere, weakness in my legs, and episodes of very

>severe back pain. I can't walk very far without my legs getting weak,

>my feet hurting like crazy, so I've started using a wheelchair part of

>the time.

>What I'm wondering about is how this progresses.

>What is the worse case scenerio, if surgery is

>not possible?

>

>My ortho.surgeon says that I am not a surgical

>candidate because of osteoporosis. The cord ends at the bottom of

>L3. And I don't know yet what kind of tether it is.

>

>I'm 57 and have had these symptoms for 15 years, and this new ortho.

>just found it. Thank god he kept looking until he found it.

>I also have fibro, degenerative disc disease and some stenosis and I

>think that has masked the other symptoms and is the reason my former

>doctors never looked any deeper.

>

>Do you have any links that will detail the progression, so I have

>some idea of what I am facing?

>

>Maureen

>

>

>