New Member

[Guest guest]

Welcome to Stilligans Island, ! I am so glad that you found us.

Smiles,

Carey in NJ

[Guest guest]

Hi ,

I definitely have all those symptoms and a heck of a lot longer than

six months, so we have the time frame covered at least! I've had a

gazillion tests over the years, so I'm no stranger to poked and

prodded. It is a diagnosis that makes sense, i guess just after all

these years of not having a diagnosis, I'm scared to have one. If

that makes any sense at all.

> Hello welcome there are articles around expaining the

criteria some symtoms being 6 months of joint pain,muscle

weakness,fatigue(sometimes very extreme),fever(which usually comes

like clockwork when active) well those are a few off top of the head

EH.As you may or may not know already Stills is a diagnosis of

exclution meaning tests,tests nad more tests to eliminate everything

else fun yes.Im glad the Enbrel has helped you it sure helps alot of

folks here as well,as of yet i have not had to try a biologic.My

meds are prednisone 4 mgs tapered from 60 mgs,15mgs methotextrate

vioxx 25 mgs every 2 days.Ohh yeah prednisone can cause wonderful

weightgain.Welcome to the Island,take care. d.Canada

[Guest guest]

Oops, , Im sorry I just saw where you answered me in your first post on who your doctor is. Im so glad to hear though that he gave you one of our brochures. That is one of our main goals to get the brochures out to as many doctors as we can. And it's nice to know that some of them are being used!!! I think you will find a ton of info here at out list. Take care

Jen

[Guest guest]

Hi ,

I'm a fairly new member, having only been diagnosed 2 years ago. I too

know how excruciating the pain can be. I hope everything goes well for you.

Oh yeah, I'm a neighbor , I live in Long Beach,CA . I hadn't felt good in

about 5 years when I got the diagnoses. It sounds like you have a good rheumy,

so hang in there. Things will get better. B.

[Guest guest]

No worries! He did give me the brochure immediately upon reviewing

my case again. I don't know how educated he was on Still's prior to

the leafleting, but he is now. And I know he's an excellent rheumy,

so I think he's at least on the right track with me.

> Oops, , Im sorry I just saw where you answered me in your

first post on who your doctor is. Im so glad to hear though that he

gave you one of our brochures. That is one of our main goals to get

the brochures out to as many doctors as we can. And it's nice to

know that some of them are being used!!! I think you will find a

ton of info here at out list. Take care

> Jen

[Guest guest]

Hi , Kathy and missing Dennis,

, I live in Palm Springs and there are a few of us that live around Los Angeles so maybe we could all get together one day. In what part do you live? It sounds like your Rheumatologist is up on Stills so you should start getting the help you need right away.

Kathy, so sorry that your daughter is sick with Stills. I hope she gets the treatment she needs to start getting better. I tried many, many medications before I found Enbrel/MTX which has helped greatly.

Dennis.....Stop hiding !!! Glad to hear from you !!

Mi. Carmen

[Guest guest]

Hi , Kathy and missing Dennis,

, I live in Palm Springs and there are a few of us that live around Los Angeles so maybe we could all get together one day. In what part do you live? It sounds like your Rheumatologist is up on Stills so you should start getting the help you need right away.

Kathy, so sorry that your daughter is sick with Stills. I hope she gets the treatment she needs to start getting better. I tried many, many medications before I found Enbrel/MTX which has helped greatly.

Dennis.....Stop hiding !!! Glad to hear from you !!

Mi. Carmen

[Guest guest]

Hi Kathy,

Welcome to this support group! Sure sounds as if your daughter does have Stills Disease.

If so, this is an early diagnosis and she should be given the proper meds to help her to feel

better soon.

Please keep in touch and let us know what meds are scripted, and how your daughter

continues to feel ..etc. By the way, what is her name?

Again.."Welcome!!"

from Wisconsin,

Tricia

-- New Member

Dear All

I am a new member and have only just joined today. I have three daughters and one grandaughter aged 2. Her mother, my eldest, is aged 22 years. For about four weeks she was suffering with a really bad rash over her body, she felt really ill and her bones ached and hurt with pain. She went to her doctors a few times and each occasion the doctor told her she had hives (an allergy) and prescribed antihistamines. He told that the aching was because she was run down. However, she was obviously concerned about it because she asked me to check out Hives on the Internet and I could not find any reference to the pain in her bones.

Last Monday (26 July) she was in so much agony and felt so rough that she decided to get into a taxi and went to her local A & E, which luckily happens to be Kings College Hospital in London. She went into a high temperature whilst there and by the morning we found she had been admitted. Luckily two specialists saw her and initially thought it was Stills, but ordered loads of tests - blood, urine etc. She had specialist rheumatologists visit her and specialist dematologists's who took photographs etc. She has been having high temperatures twice a day, stomach pains, sore throat and swollen glands and eventually on Friday she was officially told that she has Stills. She is apparently only the third person to have been diagnosed with it at the hospital.

She was in a terrible state when told and felt as if life wasn't worth living. Luckily, they let us take her home for a few nights and she spent time here with her little daughter who hugged her and told her that she loved and missed her, which made her realise life was worth living and fighting, especially as she was planning on going to University in September to study Psychology.

She is back at the hospital now and after speaking to her today, they are just finishing heart checks on her before they start her on medication. She has had a bad day today and says she has hardly been able to move her body.

Obviously, this is all new to us and we are trying to come to the terms of what the future will hold for her and also her daughter. If you can offer any help or advice or wish to know more, please just email me back.

Kind regards.

Kathy Wood

kwoodessex@...

[Guest guest]

Hi ,

Welcome to this support group! I was questioning if your

illness was truly the AOSD, but now I have read in some more

e-mails that you have had (do have) the fevers. That is one

thing everyone who fights the "dragon" (as we sometimes call

the disease...due to the fevers) gets. Those horrid fevers,

well, first it's the horrid chills, then the horrid fevers,

then the horrid sweats!!

5 years is a long time to be sick isn't it? If it started in Chile

did your doctor here feel that it could have been something you

got while in Chile? I ask because many years ago when I was a

patient at Madison University hospital, and every test there

ever there was was run on me, they kept thinking it was something

my husband gave to me from VietNam. Strange thing is that while he

was there from 1967-early 1969, he ran a high undiagnosed fever for

days that they had to call Virus X.

Anyway, anything you ever wanted to know about Stills Disease and

maybe even some things you don't want to know...you will find out here.

Happy to hear that you feel better after only 2 shots of Enbrel!

from Wisconsin,

Tricia

-- New Member

Hello,I'm , a 31 year old, single female who lives in Los Angeles. Newly diagnosed with Still's, though were not 100% on the diagnosis. In fact, that's a question I have, what criteria do you guys ues that seem to make the diagnosis more firm? Symptoms and labs.I have been sick for over 5 years. It started after an illness I had while living in Chile. It's been a long trek. I have been diagnosed with CFIDS for awhile, however, have not been quite sure that that is the correct diagnosis. What led to that diagnosis was the fact that the only thing wrong with me was Hashimoto's thyroiditis and that was under control but my symptoms were incredible.About a year and a half ago I started having incredible pains in my legs. That's when my SED rate showed up high. ANd has stayed that way. However, that was still the only test out of whack. So the rheumy sent me to an infectious disease doc who could find nothing wrong and then back to my GP who kept the diagnosis of CFIDS.Just last month I decided to go back to the rheumy and see what he said again. This time he gave me a pamphlet on Still's at the first appointment, took labs and asked me to come back in a week. The labs now showed other things wrong, ANA positive, CPK high, Complement C3 high, alkaline phosphate high, etc. And the ever elusive SED rate still up in the 60s. He felt Stills was still a candidate and put me on a one week, high dose trial of prednisone. To which I had an amazingly awful reaction. After that, I purchased 2 Enbrel shots (out of pocket since he didn't want to diagnose me with something i don't have just to try the medication). I seemed to have responded as my pain was less and, more amazingly, i didn't nap on 2 of the 3 days after taking the shot. Didn't even feel the need to nap. I called him this morning and he is going to do the paperwork to put me on Enbrel. We will give it a shot for a month and see what's what at that point in time.So I guess I'm technically diagnosed with Still's, but I'd like to learn more from you all to see if I feel it's a proper diagnosis. There is a chance that I'm responding to the Enbrel solely because I have an over-reactive immune system and it's not the Still's. At least that's my thought. Could be wrong thinking.As far as symptoms, the list is incredibly long -- and I obviously could have more than one thing going on -- but the usual suspects, pain (mostly in my legs), fatigue, cognitive issues, exercise intolerance, weight gain (which i think is another matter entirely), sores in nose.Nice to meet all of you,

[Guest guest]

Sorry she has this, but let her know this is a great place to get support. I was diagnosed 4/8/04 but my first hospitalization was in early January. I was 32 then, now I am 33. I hate this, but lean on the group when I have to. It helps.

Kirk.

New Member

Dear All

I am a new member and have only just joined today. I have three daughters and one grandaughter aged 2. Her mother, my eldest, is aged 22 years. For about four weeks she was suffering with a really bad rash over her body, she felt really ill and her bones ached and hurt with pain. She went to her doctors a few times and each occasion the doctor told her she had hives (an allergy) and prescribed antihistamines. He told that the aching was because she was run down. However, she was obviously concerned about it because she asked me to check out Hives on the Internet and I could not find any reference to the pain in her bones.

Last Monday (26 July) she was in so much agony and felt so rough that she decided to get into a taxi and went to her local A & E, which luckily happens to be Kings College Hospital in London. She went into a high temperature whilst there and by the morning we found she had been admitted. Luckily two specialists saw her and initially thought it was Stills, but ordered loads of tests - blood, urine etc. She had specialist rheumatologists visit her and specialist dematologists's who took photographs etc. She has been having high temperatures twice a day, stomach pains, sore throat and swollen glands and eventually on Friday she was officially told that she has Stills. She is apparently only the third person to have been diagnosed with it at the hospital.

She was in a terrible state when told and felt as if life wasn't worth living. Luckily, they let us take her home for a few nights and she spent time here with her little daughter who hugged her and told her that she loved and missed her, which made her realise life was worth living and fighting, especially as she was planning on going to University in September to study Psychology.

She is back at the hospital now and after speaking to her today, they are just finishing heart checks on her before they start her on medication. She has had a bad day today and says she has hardly been able to move her body.

Obviously, this is all new to us and we are trying to come to the terms of what the future will hold for her and also her daughter. If you can offer any help or advice or wish to know more, please just email me back.

Kind regards.

Kathy Wood

kwoodessex@...

Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe 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]

Welcome . I hope they find something easier to deal with. Either way, you came to the right place.

Kirk.

New Member

Hello,I'm , a 31 year old, single female who lives in Los Angeles. Newly diagnosed with Still's, though were not 100% on the diagnosis. In fact, that's a question I have, what criteria do you guys ues that seem to make the diagnosis more firm? Symptoms and labs.I have been sick for over 5 years. It started after an illness I had while living in Chile. It's been a long trek. I have been diagnosed with CFIDS for awhile, however, have not been quite sure that that is the correct diagnosis. What led to that diagnosis was the fact that the only thing wrong with me was Hashimoto's thyroiditis and that was under control but my symptoms were incredible.About a year and a half ago I started having incredible pains in my legs. That's when my SED rate showed up high. ANd has stayed that way. However, that was still the only test out of whack. So the rheumy sent me to an infectious disease doc who could find nothing wrong and then back to my GP who kept the diagnosis of CFIDS.Just last month I decided to go back to the rheumy and see what he said again. This time he gave me a pamphlet on Still's at the first appointment, took labs and asked me to come back in a week. The labs now showed other things wrong, ANA positive, CPK high, Complement C3 high, alkaline phosphate high, etc. And the ever elusive SED rate still up in the 60s. He felt Stills was still a candidate and put me on a one week, high dose trial of prednisone. To which I had an amazingly awful reaction. After that, I purchased 2 Enbrel shots (out of pocket since he didn't want to diagnose me with something i don't have just to try the medication). I seemed to have responded as my pain was less and, more amazingly, i didn't nap on 2 of the 3 days after taking the shot. Didn't even feel the need to nap. I called him this morning and he is going to do the paperwork to put me on Enbrel. We will give it a shot for a month and see what's what at that point in time.So I guess I'm technically diagnosed with Still's, but I'd like to learn more from you all to see if I feel it's a proper diagnosis. There is a chance that I'm responding to the Enbrel solely because I have an over-reactive immune system and it's not the Still's. At least that's my thought. Could be wrong thinking.As far as symptoms, the list is incredibly long -- and I obviously could have more than one thing going on -- but the usual suspects, pain (mostly in my legs), fatigue, cognitive issues, exercise intolerance, weight gain (which i think is another matter entirely), sores in nose.Nice to meet all of you,Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe 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]

Hi ,

Can I ask you what doctors you use? I am constantly searching for

good doctors. My GP recently changed practices and no longer accepts

insurance, so now I'm searching for a GP.

My cousin lives in Long Beach, I see her quite a bit down there! I

hope you are able to enjoy the nice days on the beach. I live in

Studio City (close to work on the Miracle Mile), so go down there

when I need some outdoor time. Unfortunately, i've been feeling so

bad lately I've not been visiting much.

Nice to meet you,

> Hi ,

> I'm a fairly new member, having only been diagnosed 2 years

ago. I too

> know how excruciating the pain can be. I hope everything goes

well for you.

> Oh yeah, I'm a neighbor , I live in Long Beach,CA . I hadn't felt

good in

> about 5 years when I got the diagnoses. It sounds like you have a

good rheumy,

> so hang in there. Things will get better. B.

[Guest guest]

Hi ,

Can I ask you what doctors you use? I am constantly searching for

good doctors. My GP recently changed practices and no longer accepts

insurance, so now I'm searching for a GP.

My cousin lives in Long Beach, I see her quite a bit down there! I

hope you are able to enjoy the nice days on the beach. I live in

Studio City (close to work on the Miracle Mile), so go down there

when I need some outdoor time. Unfortunately, i've been feeling so

bad lately I've not been visiting much.

Nice to meet you,

> Hi ,

> I'm a fairly new member, having only been diagnosed 2 years

ago. I too

> know how excruciating the pain can be. I hope everything goes

well for you.

> Oh yeah, I'm a neighbor , I live in Long Beach,CA . I hadn't felt

good in

> about 5 years when I got the diagnoses. It sounds like you have a

good rheumy,

> so hang in there. Things will get better. B.

[Guest guest]

Hi Tricia,

The fevers are definitely there. I've checked on and off since last

fall and it's always highest around 4pm, slowly creeping up and then

by bed time it's still up but closer to normal. My normal temp is

also 97.3. Is it normal for AOSD patients to run a low normal? At

99 or over I am burning.

I get nightsweats, is that an indicator? I have to go to bed with

it freezing in my apartment becuase i wake up sweating something

fierce. Weird part, the temp is usually down when I have the sweats.

As far as my illness in Chile, it was diagnosed as pneumonitis. Now

that i've done research and all, I think I had that with mono. By

the time I got back to the States I was so ill I had walking

pneumonia. Got over that, but have never been right since. And I

know it's all connected because the sores in my nose started while i

was still in Chile. 5 1/2 years later, they are still there. Of

course, whatever happened then could have started triggering

autoimmune reactions.

I hope nobody minds all the questions so far, and coming. I just

want to make sure I'm getting a proper diagnosis. I do think there

is more going on, but definitely have some kind of rheumatological

issue.

Thanks,

> Hi ,

>

> Welcome to this support group! I was questioning if your

> illness was truly the AOSD, but now I have read in some more

> e-mails that you have had (do have) the fevers. That is one

> thing everyone who fights the " dragon " (as we sometimes call

> the disease...due to the fevers) gets. Those horrid fevers,

> well, first it's the horrid chills, then the horrid fevers,

> then the horrid sweats!!

>

> 5 years is a long time to be sick isn't it? If it started in Chile

> did your doctor here feel that it could have been something you

> got while in Chile? I ask because many years ago when I was a

> patient at Madison University hospital, and every test there

> ever there was was run on me, they kept thinking it was something

> my husband gave to me from VietNam. Strange thing is that while he

> was there from 1967-early 1969, he ran a high undiagnosed fever for

> days that they had to call Virus X.

>

> Anyway, anything you ever wanted to know about Stills Disease and

> maybe even some things you don't want to know...you will find out

here.

>

> Happy to hear that you feel better after only 2 shots of Enbrel!

>

> from Wisconsin,

> Tricia

[Guest guest]

Hi Tricia,

The fevers are definitely there. I've checked on and off since last

fall and it's always highest around 4pm, slowly creeping up and then

by bed time it's still up but closer to normal. My normal temp is

also 97.3. Is it normal for AOSD patients to run a low normal? At

99 or over I am burning.

I get nightsweats, is that an indicator? I have to go to bed with

it freezing in my apartment becuase i wake up sweating something

fierce. Weird part, the temp is usually down when I have the sweats.

As far as my illness in Chile, it was diagnosed as pneumonitis. Now

that i've done research and all, I think I had that with mono. By

the time I got back to the States I was so ill I had walking

pneumonia. Got over that, but have never been right since. And I

know it's all connected because the sores in my nose started while i

was still in Chile. 5 1/2 years later, they are still there. Of

course, whatever happened then could have started triggering

autoimmune reactions.

I hope nobody minds all the questions so far, and coming. I just

want to make sure I'm getting a proper diagnosis. I do think there

is more going on, but definitely have some kind of rheumatological

issue.

Thanks,

> Hi ,

>

> Welcome to this support group! I was questioning if your

> illness was truly the AOSD, but now I have read in some more

> e-mails that you have had (do have) the fevers. That is one

> thing everyone who fights the " dragon " (as we sometimes call

> the disease...due to the fevers) gets. Those horrid fevers,

> well, first it's the horrid chills, then the horrid fevers,

> then the horrid sweats!!

>

> 5 years is a long time to be sick isn't it? If it started in Chile

> did your doctor here feel that it could have been something you

> got while in Chile? I ask because many years ago when I was a

> patient at Madison University hospital, and every test there

> ever there was was run on me, they kept thinking it was something

> my husband gave to me from VietNam. Strange thing is that while he

> was there from 1967-early 1969, he ran a high undiagnosed fever for

> days that they had to call Virus X.

>

> Anyway, anything you ever wanted to know about Stills Disease and

> maybe even some things you don't want to know...you will find out

here.

>

> Happy to hear that you feel better after only 2 shots of Enbrel!

>

> from Wisconsin,

> Tricia

[Guest guest]

Hi Carmen,

I'd love to get together with everyone sometime! I've met so many

great people through internet groups with my various health issues.

It's so great when you get to meet people in person.

I live in Studio City, on the canyon side. With my baby, Stein, who

is a 2 year old, 70lb, Shepherd mix rescued from South Central.

Couldn't live without my 4 legged baby.

I do have a question about MTX. Seems like a lot of people take

it. Can you tell me exactly how it helps?

> Hi , Kathy and missing Dennis,

> , I live in Palm Springs and there are a few of us that live

around Los

> Angeles so maybe we could all get together one day. In what part

do you

> live? It sounds like your Rheumatologist is up on Stills so you

should start

> getting the help you need right away.

> Kathy, so sorry that your daughter is sick with Stills. I hope

she gets the

> treatment she needs to start getting better. I tried many, many

medications

> before I found Enbrel/MTX which has helped greatly.

> Dennis.....Stop hiding !!! Glad to hear from you !!

> Mi. Carmen

[Guest guest]

Hi Carmen,

I'd love to get together with everyone sometime! I've met so many

great people through internet groups with my various health issues.

It's so great when you get to meet people in person.

I live in Studio City, on the canyon side. With my baby, Stein, who

is a 2 year old, 70lb, Shepherd mix rescued from South Central.

Couldn't live without my 4 legged baby.

I do have a question about MTX. Seems like a lot of people take

it. Can you tell me exactly how it helps?

> Hi , Kathy and missing Dennis,

> , I live in Palm Springs and there are a few of us that live

around Los

> Angeles so maybe we could all get together one day. In what part

do you

> live? It sounds like your Rheumatologist is up on Stills so you

should start

> getting the help you need right away.

> Kathy, so sorry that your daughter is sick with Stills. I hope

she gets the

> treatment she needs to start getting better. I tried many, many

medications

> before I found Enbrel/MTX which has helped greatly.

> Dennis.....Stop hiding !!! Glad to hear from you !!

> Mi. Carmen

[Guest guest]

Hi Kathy, I'm Caroline the second (C2) and I live in Oxted, Surrey.

I've been sick for 2 years, starting with stomach pain, weight loss,

fevers, the occasional rash and now fairly constant joint pain. I was

diagnosed with AOSD last summer, but then failed to respond to

steroids, so confused the docs. This summer, however, I had an amazing

response to Prednisolone, so the diagnosis is back on the cards! I've

been seeing rheumatologists at the University College group of

hospitals, but am now under a local rheumy here in Oxted, which is far

more convenient. I'm sorry that your daughter is so sick. She is

fortunate to have been diagnosed so quickly, and hopefully that means

she will be treated quickly and effectively. You've found a great

support group here. There aren't many of us in the UK, mind. I see

you've already 'met' Carole.

Anyway, if I can be of any help, do email me privately -

caroline@...

Love

C 2

> Dear All

>  

> I am a new member and have only just joined today.  

> Kathy Wood

> kwoodessex@...

>  

>  

>

>

> 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]

Hi Kathy, I'm Caroline the second (C2) and I live in Oxted, Surrey.

I've been sick for 2 years, starting with stomach pain, weight loss,

fevers, the occasional rash and now fairly constant joint pain. I was

diagnosed with AOSD last summer, but then failed to respond to

steroids, so confused the docs. This summer, however, I had an amazing

response to Prednisolone, so the diagnosis is back on the cards! I've

been seeing rheumatologists at the University College group of

hospitals, but am now under a local rheumy here in Oxted, which is far

more convenient. I'm sorry that your daughter is so sick. She is

fortunate to have been diagnosed so quickly, and hopefully that means

she will be treated quickly and effectively. You've found a great

support group here. There aren't many of us in the UK, mind. I see

you've already 'met' Carole.

Anyway, if I can be of any help, do email me privately -

caroline@...

Love

C 2

> Dear All

>  

> I am a new member and have only just joined today.  

> Kathy Wood

> kwoodessex@...

>  

>  

>

>

> 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]

Anglea, yes you will find the the majority of us here acutally have a normal temp that is considered low. It makes sense as the rise of cytokines being pumped out is set to a hormonal schedule. This is the main theory of how stills is different- a circadian cytokine disease. But no one knows why?? Nightsweats is also an indicator. What you developed in Chile probably led as your trigger for the stills. Is there anyone in your family with RA, lupus, juvenile diabetes or other autoimmune disease? aunts, uncles, cousins etc.

Jen

[Guest guest]

Hi Jen,

On both sides of my family are autoimmune issues (thyroid, diabetes

only), but i am by far the autoimmune freak of the bunch! so far

I've got Hashimoto's Thyroiditis, Lichen Sclerosis, Still's and

there's likely something else going on.

Sounds like my rheumy is onto something with the Still's. Seems my

symptoms do fit properly.

> Anglea, yes you will find the the majority of us here acutally

have a normal temp that is considered low. It makes sense as the

rise of cytokines being pumped out is set to a hormonal schedule.

This is the main theory of how stills is different- a circadian

cytokine disease. But no one knows why?? Nightsweats is also an

indicator. What you developed in Chile probably led as your

trigger for the stills. Is there anyone in your family with RA,

lupus, juvenile diabetes or other autoimmune disease? aunts,

uncles, cousins etc.

>

> Jen

[Guest guest]

Welcome Jeff;

I'm nicknamed Melt, have had Stills 25 plus years and am in remission at this time. We look forward to knowing you better and hope for better days ahead.

Smiles for your days, Melt

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

From: jcsrnc

Hi My name is Jeff. I was diasgnosed with Stills this past Feb/March.

[Guest guest]

Caroline,

I was curious, because I live in Laurel Park about 12-15 minutes from Lost Creek. Also thanks for the referral on Dr. Hornsby. I have been seeing since I was the hospital, this past winter. She is a good RD, but did not have much experience with SD.

I have an appt with her this Thursday. Have a good day.

JeffC J wrote:

Jeff,

I didn't get your email or I most likely would have replied. There are a lot of folks who can feel the weather coming in their joints, especially in Hurricane and tornado country. I personally have not noticed one way or the other. I do get more sick in the winter though. Sorry about the bouncing. It' s happened to me before too.

Smiles, CarolineJeff Rush wrote:

Caroline,

I tried to respond last week to your email, I don't know if you got it or not. The bouncing email got me. Thanks for taking time to write. I hope you and everyone else with stills are always able to enjoy their day to its fullest potential.

Jeff

P.S. I am curious if anybody else experiences pain or increased pain prior to a weather change. My hands were throbbing last night, keeping me awake for awhile. We're supposed to get rain tonight and tomorrow from the storm Jeanne. Or maybe its all in my head. lol C J wrote:

Jeff,

Well, well... never expected to be doing this exactly. My husband is / Jeff.... depending on who you are. He was Jeff as a child, as a teen and on. LOL I was born in WV and have family in Lost Creek, near sburg. I don't know how far you are from polis and 's Hopkins University which is a great place, but I thought I would give you another reference just in case. Maybe this is near you, maybe not.

When I was visiting my W V family, I felt a flare coming on and researched for a doctor familiar with Stills. I found one who called me personally. Great experience. Here's the reference: Dr Hornsby (in town) 1-. It has been a couple of years so maybe this doctor has moved on, maybe not. Hoping not for your sake. AND , just because I had a positive experience does not mean you would. Personalities and all. LOL

Smiles, Caroline

PS: Welcome! Can't say we missed you but certainly are GLAD you found your way HOME! Sorry you have to be here but very happy to have you. LOL

(Beautiful Southern Oregon, USA)

We may not be able to change the direction of the wind, but we can adjust our sails.

May you have enough happiness to make you kind, enough trials to make you strong, enough sorrow to keep you human, enough hope to make you happy.

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[Guest guest]

Hi Kim and welcome,

This might not be all that useful, and I apologize for that in

advance, but FWIW:

I'm a 45 year old mom who skateboards and there are times when it's

just about all I think about. I am not in any way trying to downplay

your son's problems--they sound quite debilitating--but I do want to

speak out as a skater because I very much doubt you'll find many

medical professionals who will take his passion seriously. I have many

women friends who skate and, as silly as it may sound, many of us have

lost sleep at night because we couldn't get out of our minds the

visions of trying to master the Ollie or other skate tricks. (Our

spouses are just happy we're not fantasizing about Brad Pitt.)

I'm not at all saying your son's case is a matter of innocent

daydreaming, but I do want to state that skateboarding, like many

technically demanding activities, seems to require a lot of " mental

practice. " I think writers, artists, thespians all experience these

intrusive thoughts too--they consider it part of their work. I still

can't drive down the road without wondering how I would skate that

paved storm run-off over there, or that cement ditch over there, or

that steep freeway on-ramp over there...

Certainly your son's experience sounds like it has crossed the

boundary into OCD, but I just wanted you to know that **part** of it

at least is normal for dedicated skaters.

Have you ever had his IQ tested? Sounds like a gifted boy to me.

Sorry if this didn't help much, and I hope you find a peaceful remedy

soon.

Cat

>

> Hi All,

> I just found this group today and am happy to have others to talk to

> about our 13 yr. old son's OCD. He began having obsessions about

> skateboarding last spring. We suspected that he might have OCD, but

> we didn't know much about it yet and it didn't seem to be interfering

> with our regular family life and homeschooling schedule at that point

> in time.In September,when we began working on homeschooling

> assignments again,we realized that he was having a lot of trouble

> concentrating and he also seemed very depressed.We live in an area

> that is medically underserved, so it has taken us many months to find

> a psychiatrist and CBT therapist to work with him. He has been taking

> prozac( 20 mg)for 6 weeks and that has helped him sleep better and

> his mood has really improved, but he still has troubles calming down

> at bedtime because of his intrusive thoughts. His Dr. has increased

> the dose to 40 mg, but he has only taken 30 mg. for two days and then

> will increase the dose to 40 mg.in 5 days. He has a magical thinking

> type of OCD where he is afraid to do, or like things that he used to

> like before he began skateboarding last spring. He is especially

> afraid to think about other sports that he really liked to

> participate in before he discovered skateboarding because he belives

> that this will give him bad luck with skateboarding. He is also very

> afraid that he will stop liking it altogether. He can't even watch

> sports on TV and has to leave the room. He has made some progress

> doing some of the things he used to enjoy( like eating cereal

> again,playing a skatebarding video game,playing with our pets, etc.)

> but he has a long way to go. It has been hard on his twin brother

> also because he really wants him to like skatebarding too, but he is

> not into it at all. We are hoping that the increase in his meds will

> help him relax more, so that he will find it easier to talk back to

> his bad thoughts and be able to enjoy more of the activities that he

> used to. We would also really like to have him get back into reading

> & learning about other things, besides skatebarding.It is hard at

> times, for us to tell the difference between OCD and normal teen

> behaviors!

>

> We look forward to sharing with the group!

>

> Kim

>

[Guest guest]

Welcome to the group.

You'll find this group to be very helpful and supportive. Sorry to

hear you don't get much support from your family. Glad you found

this site, though. It definitely helps being able to share your

experiences with others that know what you are going through.

You mentioned your son is getting help. Is he doing CBT/ERP therapy

and/or taking any medication? Our 17 yr old son has OCD and GAD.

The SSRI he is on has really helped with the GAD; not much help with

the OCD, though. He is doing CBT/ERP therapy. We've seen some

slight improvement in the OCD with the therapy. I think eventually

it is the therapy that will really help him; it's just going to take

some time.

Take care

Connie

>

> Hi! Just wanted to share what I have experienced with my son in

the

> past year. He is 11 and has GAD along with some OCD. I am having

> trouble communicating with him. I am at a loss for what to say at

this

> point. He is getting help but for me without support from other

family

> members it makes it that much harder as time goes on. I'm glad to

share

> with you and to be a part of this group.

>

> Be Well

>