Introduction

April 2, 2000

Hello ,

Have you gone to Dr. Salvato(sp?). I beleive she is in the Dallas area and seems to get very good reviews from her patients. There are a number of members of this list who see her. Her first line treatment seems to be ATP/Glutathione injections.

Regards,

Introduction

Hello,

As requested, I am presenting a brief history for the list.

Newton

>>Snip

Chiropractic practice in Dallas, Tx from 1983 to 1997. Have been on Social Security Disability since May of 1997.

>>Snip

April 2, 2000

Hi Liam,

How's the crewchange looking for me to get back to the Alliance? lol

Stuart someone.

> Subject: Introduction

> Date: Sun, 2 Apr 2000 9:14:00 +0000

> From: alliance.medic@...

> ian@...

>

> Hello Ian,

> My name is Liam McNamee, I'm an ex Royal Naval Medic having

> spent nearly 13 years on various ships, I spent 2 years as a dedicated

> SAR Medic at a Naval Air Station in Scotland and also spent 2 years

> with the Royal Marines. I'm working offshore at present on a large

> diving vessel called Alliance although I'm only standing in for

> someone, my permanent ship is the Seawell. Both vessels are run by

> Coflexip Stena Offshore. I would be obliged if you would keep me

> updated at my home email address which is liam102@..., look

> forward to hearing from you.

>

> cheers

>

> Liam

>

April 5, 2000

Introduction

>

> From: " k adams " <mwa@...>

>

> Thankyou Aisha for welcoming me to the group. I hope I am not being

> redundant because I have signed up for a bunch of the groups at this

> site. Thankyou for setting this site up it is great. As I just

> became literate about a month ago about getting around on the

> internet, (And I wouldn't exactly say I am literate), this is the

> first place that I have actually been able to talk with others and

> get info on my disease. At latest diagnosis I was told I have

> microscopic vasculitis. I need to clarify that with dr again. I am

> still fairly ignorant about my disease. I just found out that there

> are actually about10 or so different kinds of the disease. I found

> this through the JOHN HOPKINS SITE. Before this I wasn't even so

> sure I had a disease as I was told by some primary drs that

> vasculitis is just a condition of other diseases and not a disease in

> itself so I have been pretty confused myself. People will say pan or

> wegners.

> My disease started about 3 yrs ago. At first my symptoms were mainly

> joint pain, fevers, just feeling generally crappy. I was told that I

> probably just had a virus or something. I was put on about 8

> different antibiotics. My symptoms just didn't go away. My dr at

> the time was reluctant to send me to a rheumotologist ( I was on hmo

> at the time i am convinced now that is why). She finally sent me to

> pulmonologist when I started to have blood tinged sputum. He did

> bronchoscopy and found a couple of places where i had been bleeding

> from but said " he did not find what he was looking for " . I went to a

> rheumotologist who put me on prednisone. He gave me phamplet on

> wegeners and Pan was very casual about the fact that I had anything.

> acted like it was no big deal told me that more and more people are

> being diagnosed with this. I was fine till he tapered me off of it

> and then my smyptoms came back, so he put me on another round of it

> and same thing happened, but when I went back to him to tell him my

> symptoms had come back. He more or less told me to just take hot

> baths. When I became emotional because it was getting really

> difficult to work and keep my life together he said I just needed to

> get off the prednisone that it was making me emotional. I left there

> feeling like maybe I was just being a big baby or a hypochondric or

> something. I spent about 3 month just trying to survive on Nuprin

> until I couldn't take it anymore.

> I finally found another rheumotologist. His reaction was so

> different he put me on prednisone and methotrexate and this seem to

> do the trick for awhile although I was still having alot of joint

> pain but I was able to function somewhat better. Then after about a

> year of being on that everything seemed to flair up I started to

> couph up a lot of blood, I was getting short of breath, I started to

> bleed from bowels had blood in urine and started to break out with

> spots all over hands and feet. I ended up in bed for 2 weeks and

> symptoms just kept getting worse. I wound Up in the hospital for 2

> weeks last year. I had to be put on oxygen because lungs filled up

> with blood and I had to have a blood transfusion. They started me on

> Iv cytoxan and prednisone. Was on pred for 6mo and getting monthly

> cytoxan. As soon as I got off pred and they reduced cytoxan to every

> 3 mo symptoms returned. So at present I am getting daily cytoxan

> 150mg daily and symptoms have calmed down quite a bit. But I will

> have flare ups on and off where I just have to go to bed for 3 to4

> days at a time. Then it calms down again. So that is where I am at

> now.

> Besides that and when I am feeling somewhat normal I love to garden,

> needle point and just enjoy life. I have a supportive husband and

> two great kids. A daughter 14 and a son 10. I am looking forward to

> the day this disease decides to go away. But, I am also trying to

> accept the fact that is may never go away and that I will have to

> learn to deal with feeling like I am 95 when I am only 40. I also am

> trying not to get depressed about the fact that these drugs could

> give me cancer down the road. The treatment is almost as bad as the

> disease itself. Anyway I hope I have not put you all to sleep with

> my rambling on. Its just that this is the first time I have found a

> place to really vent and share. I look forward to hearing from you

> all Thanks Kellie I hope I didn't send out two posts I think I lost

> the first one so I had to retype I didn't see it on the posting I

> think I lost it when I hit the wrong button. But if I sent two I

> apologize.

>

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April 5, 2000

Oh my!

Kellie when you reposted this I thought was back! I was about to jump up and down and get all excited!!

Good thing I didnt as I'd have looked a right sight! I am wearing my fattie jam bottoms (which are actually my husbands pj pants! LOL) and a shirt which I realised I have on inside out! LOLOL

I'm joining Tina in the migraine stakes today ... ugh....

*hugs to all*

Aisha <------ queen of the sillies!

April 6, 2000

oops!!! spasms of the hand I guess.

Re: Introduction

Oh my!

Kellie when you reposted this I thought was back! I was about to jump up and down and get all excited!!

Good thing I didnt as I'd have looked a right sight! I am wearing my fattie jam bottoms (which are actually my husbands pj pants! LOL) and a shirt which I realised I have on inside out! LOLOL

I'm joining Tina in the migraine stakes today ... ugh....

*hugs to all*

Aisha <------ queen of the sillies!

View Members profiles, locations, hobbies and all that plus find out when their birthday are by visiting /files/ Visit The Members Loungehttp://www.elderwyn.com/members

April 9, 2000

Hi,

Sorry for the late reply, but welcome. Always nice to see another MI person

here too! I'm glad you enjoy this list and hope you will get some answers.

Take care, Christie

--------

>

>As requested, I am presenting a brief history for the list.

>

> Newton

>

April 13, 2000

Hi ,

Welcome to the list. I recently joined for support. My son has Burkitt's

Lyphoma. He is currently in remission. I also have some health concerns. I

know you will find what you are looking for here. You couldn't ask for a

better group of people to uplift and support you.

I was desperate to find people to understand how I was feeling. I have found

that here. I know how hard it is to watch you little one go through medical

procedures. It is heartbreaking. I know all about the central line. My son

had one that he recieved his chemo through.

If there is ever anything I can do for you email me. My thoughts are with

you and your family. What is the prognosis for your son?

Love and lots of cyber hugs ((((((((((((((((((HUGS))))))))))))))))))

Mo

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April 13, 2000

Welcome !

Yes you have found the right place!

I'm really sorry to hear that your child is so ill. That is devistating. In this extended family we also have other mom's whose kiddies are sick - so you are not alone!

Also, we have carers too... for adults. Plus we all understand what it is like to live with illness. Emotions especially. This is a place to share, vent, sware and curse! Yes we also get medical at times, but first and foremost we are a global family.

Glad you found us! Feel free to write what you want (positive/negative - we all have our days!) there is always someone around!

Gotta go.. looking up diseases (lovely way to pass a day!)

Take care and talk as much as you want - and you can write huge long emails - we all do

Welcome!

Love Aisha.

April 13, 2000

Dear ,

Welcome to the group. I am sure you will find the support and love that you

are looking for from this group. It is a great bunch of people. I believe

that your little boy is very sick and that it must be a horrible strain even

though you love him very much to deal with everyday. I hope that you have

some support so that you can also take care of yourself at times. I

definitely understand what it is like to be sick. And I also understand

what it must be like to take care of others when they are sick. My husband

has had to assume care for me and my children and everything else when I am

sick with my disease and can't do anything. I know this is a horrible extra

strain on him on top of everything else. is my husbands name,

also. Please feel free to share anything. There are both people struggling

with illnesses on here and also people taking care of others dealing with

illnesses, so I think this is a perfect place for you to be. welcome.

Kellie

Introduction

Hello to everyone. Let me first start out by saying that I don't know if

I've found the right place for me or not, but I'm going to give it a

shot. Please accept my apologies in advance if this post runs a bit

long...

I'm here because my 15 month old son, , is a very sick little

boy, and truly, it does SUCK!! A little background on Matty (I'll make

it as brief as possible, but he is a complicated child...)

has several diseases. He has Pearson's Syndrome (a very very

rare mitochondrial disorder), Kearns-Sayre Syndrome (a second

mitochondrial disorder, not quite as rare but still uncommon), Reactive

Airway Disease (almost like asthma, but not quite), Fanconi Syndrome (a

kidney disorder), and Periventricular Leukomalasia (death of brain

tissue).

I know from all of this that it sounds as though I am making it up...no

child could ever be this sick, right?? But I promise you that all of it

is real, he does suffer from all of those diseases...I would never wish

this on anyone, let alone my own child.

was sick from birth, but our pediatrician at that time wouldn't

believe me...so testing didn't begin until Matty was 3 months old and in

full bone marrow failure. His first diagnosis, Pearson's Syndrome, came

at the age of 5 1/2 months, and it's been a full -fledged fight for his

life since then. (In the hopes of keeping this post to a reasonable

length, I won't go into specifics about his diseases now, but I am more

than willing to answer any and all questions).

currently is on a 24 hour IV hookup at home, he has a central

line and a g-tube. He takes 5 IV medications every day, at least 7 oral

(or g-tube) meds everyday, and 2 inhaled meds every day (several times a

day).

is my 4th child, 3 of whom are living. I have a 7 year old

daughter, Adrienne, and a 2 year old daughter, Grace. My first son,

, was premature and died within minutes after birth.

Before got sick, I worked full time outside of the home, and

also went to school pursuing a major in elementary education. Now I

barely have time to shower every day, let alone work or go to school!!

As I said in the beginning of this post, I'm not sure if this is the

right place for me. I'm on a couple of other onelists related

specifically to 's conditions, but I have found that although

they are a wealth of medical and practical advice, the personal aspect

is missing. That's what I'm looking for now, someplace where people can

understand what it's like to be sick, or to care for someone who is ill.

Thank you again for your time and patience with me!!

,

Columbus, Indiana

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April 14, 2000

Welcome to the group . If there is ever anything I can do for you

please let me know.

Tina 1

>From: Hyten <whyten@...>

>Reply-egroups

>onelist

>Subject: Introduction

>Date: Thu, 13 Apr 2000 22:59:23 -0700

>

>Hello to everyone. Let me first start out by saying that I don't know if

>I've found the right place for me or not, but I'm going to give it a

>shot. Please accept my apologies in advance if this post runs a bit

>long...

>I'm here because my 15 month old son, , is a very sick little

>boy, and truly, it does SUCK!! A little background on Matty (I'll make

>it as brief as possible, but he is a complicated child...)

> has several diseases. He has Pearson's Syndrome (a very very

>rare mitochondrial disorder), Kearns-Sayre Syndrome (a second

>mitochondrial disorder, not quite as rare but still uncommon), Reactive

>Airway Disease (almost like asthma, but not quite), Fanconi Syndrome (a

>kidney disorder), and Periventricular Leukomalasia (death of brain

>tissue).

>I know from all of this that it sounds as though I am making it up...no

>child could ever be this sick, right?? But I promise you that all of it

>is real, he does suffer from all of those diseases...I would never wish

>this on anyone, let alone my own child.

> was sick from birth, but our pediatrician at that time wouldn't

>believe me...so testing didn't begin until Matty was 3 months old and in

>full bone marrow failure. His first diagnosis, Pearson's Syndrome, came

>at the age of 5 1/2 months, and it's been a full -fledged fight for his

>life since then. (In the hopes of keeping this post to a reasonable

>length, I won't go into specifics about his diseases now, but I am more

>than willing to answer any and all questions).

> currently is on a 24 hour IV hookup at home, he has a central

>line and a g-tube. He takes 5 IV medications every day, at least 7 oral

>(or g-tube) meds everyday, and 2 inhaled meds every day (several times a

>day).

> is my 4th child, 3 of whom are living. I have a 7 year old

>daughter, Adrienne, and a 2 year old daughter, Grace. My first son,

>, was premature and died within minutes after birth.

>Before got sick, I worked full time outside of the home, and

>also went to school pursuing a major in elementary education. Now I

>barely have time to shower every day, let alone work or go to school!!

>As I said in the beginning of this post, I'm not sure if this is the

>right place for me. I'm on a couple of other onelists related

>specifically to 's conditions, but I have found that although

>they are a wealth of medical and practical advice, the personal aspect

>is missing. That's what I'm looking for now, someplace where people can

>understand what it's like to be sick, or to care for someone who is ill.

>

>Thank you again for your time and patience with me!!

>

>,

>Columbus, Indiana

>

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April 14, 2000

Hi aand welcome!! I think you will find that this is the right

place. This group is very caring & understanding & loving,etc.etc. I am so

sorry about your little boy. I hopeyou have good support so you can take

care of yourself also .It is so easy to burnout then you can't take care of

anyone. Hugs ne

>From: " Matt and Kellie " <mwa@...>

>Reply-egroups

>egroups

>Subject: Re: Introduction

>Date: 13 Apr 2000 21:17:57 -0700

>

>Dear ,

>

>Welcome to the group. I am sure you will find the support and love that

>you

>are looking for from this group. It is a great bunch of people. I believe

>that your little boy is very sick and that it must be a horrible strain

>even

>though you love him very much to deal with everyday. I hope that you have

>some support so that you can also take care of yourself at times. I

>definitely understand what it is like to be sick. And I also understand

>what it must be like to take care of others when they are sick. My husband

>has had to assume care for me and my children and everything else when I am

>sick with my disease and can't do anything. I know this is a horrible

>extra

>strain on him on top of everything else. is my husbands name,

>also. Please feel free to share anything. There are both people

>struggling

>with illnesses on here and also people taking care of others dealing with

>illnesses, so I think this is a perfect place for you to be. welcome.

>Kellie

> Introduction