Newly diagnosed

[Guest guest]

Hello everyone,

This is my first posting to the AOSD discussion group.

First, a little about me: my name is Tom Koch and I'm from a small

town in central Illinois called Tremont - just south of Peoria on the

map. I'm a 29 year old single guy and I work as an engineer for

Caterpillar. In my spare time, I enjoy hunting, fishing,

backpacking, and anything outdoors (at least I used to).

On May 3rd, I was diagnosed with AOSD. Since being discharged from

the hospital, it seems like my worst symptom is pleurisy around my

lungs - severe chest pain and difficulty breathing. Flare-ups are

somewhat unpredictable, but usually occur after some physical

activity. My rheumatologist has me on 60mg prednisone, an antacid,

plus a sleeping pill. For the pleurisy, he told me to take ibuprofen

and if that doesn't work, he prescribed vicodin.

Being new to this disease, I just have a few questions that have been

bothering me:

1) Can anyone tell me how long I can expect the pleurisy to last? Is

it a long-term symptom or something that will subside after a while?

2) I lost a lot of strength when I was in the hospital, and I'd

really like to start building it back up. My doctor told me I can

basically do as much activity as I can tolerate. I need to do both

strength training and cardiovascular exercise, but I'm a little

concerned that it will irritate my lungs and joints. Any

recommendations on how much I should push myself at this point?

3) Finally, I have a friend (non-doctor) who gave me some information

on a class of dietary supplements called glyconutrients. Supposedly

they can help cure the underlying cause of many autoimmune diseases.

Has anyone heard of or tried anything like this? Are there any

dietary supplements that are helpful for this disease or is this all

just quackery?

Thanks in advance for your responses!

Tom

[Guest guest]

hi tom, although we are all different we do tend to have some of the same

symptoms. i have had pluresy twice, it took about 2 weeks the first time to go

away and 1 week the second time. for me flares come and go , worse ones lasting

a week or two, pred, normally gets me out of it , god bless, and be pain free

soon.

tdkoch2001 wrote: Hello everyone,

This is my first posting to the AOSD discussion group.

First, a little about me: my name is Tom Koch and I'm from a small

town in central Illinois called Tremont - just south of Peoria on the

map. I'm a 29 year old single guy and I work as an engineer for

Caterpillar. In my spare time, I enjoy hunting, fishing,

backpacking, and anything outdoors (at least I used to).

On May 3rd, I was diagnosed with AOSD. Since being discharged from

the hospital, it seems like my worst symptom is pleurisy around my

lungs - severe chest pain and difficulty breathing. Flare-ups are

somewhat unpredictable, but usually occur after some physical

activity. My rheumatologist has me on 60mg prednisone, an antacid,

plus a sleeping pill. For the pleurisy, he told me to take ibuprofen

and if that doesn't work, he prescribed vicodin.

Being new to this disease, I just have a few questions that have been

bothering me:

1) Can anyone tell me how long I can expect the pleurisy to last? Is

it a long-term symptom or something that will subside after a while?

2) I lost a lot of strength when I was in the hospital, and I'd

really like to start building it back up. My doctor told me I can

basically do as much activity as I can tolerate. I need to do both

strength training and cardiovascular exercise, but I'm a little

concerned that it will irritate my lungs and joints. Any

recommendations on how much I should push myself at this point?

3) Finally, I have a friend (non-doctor) who gave me some information

on a class of dietary supplements called glyconutrients. Supposedly

they can help cure the underlying cause of many autoimmune diseases.

Has anyone heard of or tried anything like this? Are there any

dietary supplements that are helpful for this disease or is this all

just quackery?

Thanks in advance for your responses!

Tom

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute for

medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical or

professional medical services. You should consult your physician on specific

medical questions, particularly in matters requiring diagnosis or medical

attention. The International Still's Disease Foundation makes no representations

or warranties with respect to any treatment, action, application, medication or

preparation by any person following the information offered or provided within

this support form.

ion by any person following the information offered or provided within this

support form.

[Guest guest]

Tom:

Welcome and hello. I to be a single guy. Well kind of as not married

again yet that is but well be soon. When I came down with this I was

married but that ended less then two years in to it. Some thing about me

being lazy and not working so I could not give her money .LOL

Any hoot. You sound like you enjoy the things I used to also. All the

outdoor goods. I lived in Idaho back then so you can let the mind run as

to what I hunted and fished for ; -) now days I finally am back to at

lest fishing again. .

I have never fully built back up to pre stills times .I have tried but I

get to wore out and start hurting when I push to much but push I do as I

want to enjoy my time here on earth.

I as many here have spent time in hospitals never any fun and not like

camping at all.

Most of my pains no matter were seam to come and go some take longer

then others. The only ones to really seam to like hanging with me are

some joint ones. There not in as good of shape as I am so they try to

slow me down so they can keep up .I call them knee hip and toes LOL

I can not give you answers for what you're asking. just a welcome and

let you know your not alone in this and there is life after stills it

just takes some time finding the right speed on the gas pedal not to

fast burning your self out and not to slow that you mess every thing .

Just remember all you did before you still can just may be not as long

or hard as we once did. so when you get your good days and after time

you will know when they are enjoy your dreams and hobbies on bad ones

rest and rebuild for the good days

I have had this for about 6 years confirmed but believe a possibility

that I have had it for over 41 years now. No fun but also with some

adjustment almost like new some days LOL

Marty

Now let all go kick some dragon but

Newly diagnosed

Hello everyone,

This is my first posting to the AOSD discussion group.

First, a little about me: my name is Tom Koch and I'm from a small

town in central Illinois called Tremont - just south of Peoria on the

map. I'm a 29 year old single guy and I work as an engineer for

Caterpillar. In my spare time, I enjoy hunting, fishing,

backpacking, and anything outdoors (at least I used to).

On May 3rd, I was diagnosed with AOSD. Since being discharged from

the hospital,

_____

[Guest guest]

Hello and welcome Tom,I'm 34 from Edmonton Canada,go Oilers .For me

personally the pleurisy did take quite awhile to improve I also started out

with 60 mgs of Pred and later added Methotextrate after 3 flare-ups much

less severe than Onset.I too lost almost all muscle at onset and when first

out of hospital I worked with elastic bands those seemed to help alot and

offered just as much resistance as I could handle,I also improvised and used

's soup cans as Dumbbells.Does your healthcare cover physical

therapists I know mine when first out of the hospital was wonderful but I

had others after her that were not so good .Take care hope your felling

better and breathing easier soon. d.Canada Original Message -From:

" tdkoch2001 "

To: <Stillsdisease >

Sent: Saturday, May 20, 2006 4:37 AM

Subject: Newly diagnosed

Hello everyone,

This is my first posting to the AOSD discussion group.

First, a little about me: my name is Tom Koch and I'm from a small

town in central Illinois called Tremont - just south of Peoria on the

map. I'm a 29 year old single guy and I work as an engineer for

Caterpillar. In my spare time, I enjoy hunting, fishing,

backpacking, and anything outdoors (at least I used to).

On May 3rd, I was diagnosed with AOSD. Since being discharged from

the hospital, it seems like my worst symptom is pleurisy around my

lungs - severe chest pain and difficulty breathing. Flare-ups are

somewhat unpredictable, but usually occur after some physical

activity. My rheumatologist has me on 60mg prednisone, an antacid,

plus a sleeping pill. For the pleurisy, he told me to take ibuprofen

and if that doesn't work, he prescribed vicodin.

Being new to this disease, I just have a few questions that have been

bothering me:

1) Can anyone tell me how long I can expect the pleurisy to last? Is

it a long-term symptom or something that will subside after a while?

2) I lost a lot of strength when I was in the hospital, and I'd

really like to start building it back up. My doctor told me I can

basically do as much activity as I can tolerate. I need to do both

strength training and cardiovascular exercise, but I'm a little

concerned that it will irritate my lungs and joints. Any

recommendations on how much I should push myself at this point?

3) Finally, I have a friend (non-doctor) who gave me some information

on a class of dietary supplements called glyconutrients. Supposedly

they can help cure the underlying cause of many autoimmune diseases.

Has anyone heard of or tried anything like this? Are there any

dietary supplements that are helpful for this disease or is this all

just quackery?

Thanks in advance for your responses!

Tom

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute

for medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical

or professional medical services. You should consult your physician on

specific medical questions, particularly in matters requiring diagnosis or

medical attention. The International Still's Disease Foundation makes no

representations or warranties with respect to any treatment, action,

application, medication or preparation by any person following the

information offered or provided within this support form.

ion by any person following the information offered or provided within this

support form.

[Guest guest]

Tom;

Yes you can all it takes manly is some adjustments and some time

getting to learn all over how far you can go and for how long . I still

have done some traveling and am now engaged to a wonderful woman.

One thing I changed is I used to float tube fish all the time now I use

an inflatable pontoon boat with an elec. Motor on it that's just one of

the changes. For you deer hunting if you were a stacker looking in to

becoming a stand hunter things like that

Marty

[Guest guest]

Welcome to our group, Tom and Hello:

You have found a great place to be since you are facing down this dragon.

Feel free to ask questions, and we will do our best to provide the

information.

I am and I live in Medford, Oregon. I have been struggling with this

dragon since I was a child--diagnosed @ 12 but remember the pain as young as

3 or 4. In about 3 months, I'll be 40.

I too have bouts with Pleurisy. I have since childhood. It lasts as long as

it wants to. I have seen good results with Prednisone and an antibiotic

--now I'm allergic to almost all antibiotics. :-(

Still's is as individual as we are as people. We all have different symptoms

yet we also share symptoms. It would rather be sad to say it's tailored to

each individual but it may be closer to the truth than we care to admit.

Strength. Hmm. I know I put my strength around here somewhere but I just

can't remember where! LOL. I have lost a lot of my strength. I was into

weight training

up-keep of my body when I was in remission. Now I can't even lift 5 pounds

without pain. Bummer:-( But I'm sure others are doing better than I am in

this department.

I hope to start water exercise soon. It's a great way to rebuild muscle and

the water proves to be great with resistance. But my advice to anyone is to

see a Dr. and receive permission for this.

Alternative treatments and nutritional supplements are an individual thing.

I say to use extreme caution when a product makes claims of a cure--of

diseases that Dr's have not found a cure for. For example, one person may

find good results from a certain vitamin however, the next person takes it

and feels worse. This is not saying that the vitamin is bad. It is just

saying that for the one person it didn't work. So, the rule of thumb would

be use caution when deciding if you should take a supplement or other forms

of alternative treatments. Some of the fly by night claims have been a form

of quackery.

Again, Welcome to the group. I am sure you will be glad you found us. You

will find information, support, and kindness. And also friendship.

, Oregon

>

> Hello everyone,

>

>

> my name is Tom Koch and I'm from a small

> town in central Illinois called Tremont - just south of Peoria on the

> map. I'm a 29 year old single guy and I work as an engineer for

> Caterpillar.

>

> 1) Can anyone tell me how long I can expect the pleurisy to last? Is

> it a long-term symptom or something that will subside after a while?

>

> 2) I lost a lot of strength when I was in the hospital, and I'd

> really like to start building it back up. My doctor told me I can

> basically do as much activity as I can tolerate. I need to do both

> strength training and cardiovascular exercise, but I'm a little

> concerned that it will irritate my lungs and joints. Any

> recommendations on how much I should push myself at this point?

>

> 3) Finally, I have a friend (non-doctor) who gave me some information

> on a class of dietary supplements called glyconutrients. Supposedly

> they can help cure the underlying cause of many autoimmune diseases.

> Has anyone heard of or tried anything like this? Are there any

> dietary supplements that are helpful for this disease or is this all

> just quackery?

>

> Thanks in advance for your responses!

>

> Tom

>

--

SPEEDY :-)

Meds:

MTX 15 mg; Prednisone 5mg; Leucovorin 5 mg; Armour Thyroid 60 mg

Supporters:

MSM; DHEA 25 mg; Omega3 fish oil 8 daily; Vit. C; Vit. D; B-Complex; Vit

B-12;

Lithium Ortate; Osteo Comlex; Glucosamine & Chondroitin; and Essential

Minerals, AND cALCIUM 1500 mg

" Love endures all things. "

[Guest guest]

Contact Dr. Dobyns at the university of Chic. best advice in terms of

expertise on PMG. One thing you will learn from this group is no two kids

are the same, even though we have same/similar diagnoses..

Our son is 9 years old..he was diagnosed early..but he never stood, spoke, sat

up, or ate on his own. Some of the kids are not as involved as ..for

whatever reason.... but these families are a wonderful and loving resource

for advice. When the seizures started for ...at age 4... it was the

start of alot of big changes, that have not stopped...but this site has given me

comfort in knowing that we are not alone...

And even better, that other people are as touched by miracles as we are.

God Bless you... you really never know...how things will go, but one

reliability is your faith and love. Best of luck with your little angel

baby...

traciloo11 wrote:

Hello,

My son just had an MRI and it came back with pmg. He is 9 months olds.

He cannot sit up unassisted, but loves to stand (with us holding him

of course). He just started army crawling around. The daycare lady

says that sometimes she turns around and he is gone. He doesn't seem

to have a problem eating (except with a spoon, it seems to freak him

out), and he seems normal intelligence wise. He watches little

Einstein, loves the dog, laughs at our older son etc... I was just

wondering if anyone out there can offer some advise?

Thanks,

Traci

Ann Hasselberger

District Leader

Primerica Financial Services

1 (203)788-9602

jhasselberger@...

www.primerica.com

www.citigroup.com

[Guest guest]

Thanks. We live in Cailfornia. How do I get in tough with this Dr.

Dobyns?

> Hello,

> My son just had an MRI and it came back with pmg. He is 9 months

olds.

> He cannot sit up unassisted, but loves to stand (with us holding

him

> of course). He just started army crawling around. The daycare lady

> says that sometimes she turns around and he is gone. He doesn't

seem

> to have a problem eating (except with a spoon, it seems to freak

him

> out), and he seems normal intelligence wise. He watches little

> Einstein, loves the dog, laughs at our older son etc... I was just

> wondering if anyone out there can offer some advise?

>

> Thanks,

> Traci

>

>

>

>

>

>

>

> Ann Hasselberger

> District Leader

>

>

>

> Primerica Financial Services

> 1 (203)788-9602

> jhasselberger@...

>

>

> www.primerica.com

>

> www.citigroup.com

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Thanks

> > Hello,

> > My son just had an MRI and it came back with pmg. He is 9 months

> olds.

> > He cannot sit up unassisted, but loves to stand (with us holding

> him

> > of course). He just started army crawling around. The daycare

lady

> > says that sometimes she turns around and he is gone. He doesn't

> seem

> > to have a problem eating (except with a spoon, it seems to freak

> him

> > out), and he seems normal intelligence wise. He watches little

> > Einstein, loves the dog, laughs at our older son etc... I was

just

> > wondering if anyone out there can offer some advise?

> >

> > Thanks,

> > Traci

> >

> >

> >

> >

> >

> >

> >

> > Ann Hasselberger

> > District Leader

> >

> >

> >

> > Primerica Financial Services

> > 1 (203)788-9602

> > jhasselberger@

> >

> >

> > www.primerica.com

> >

> > www.citigroup.com

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

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> >