Re: mystery diagnoses and AOSD

[Guest guest]

,

Are you talking about the episode with Nissa Penland again? Was she a nurse?

She is one of the members of this list. I think this episode came out last

year? Not sure she feels like a lucky duck, but happy to be diagnosed I'm sure.

Stay Healthy

Palmer

[Guest guest]

I have been looking for this show & have never been able to find it! I

did however catch a show about an Iraq Veteran who drove Dr's nuts with many

crazy symptoms but it turned out to be something else.

I don't know if I ever asked this before, but if ANYONE knows of ANY vets

who were in between 1990-1991 @ Ft. Benning who later became ill (ANY

auto-immune disorders) please let me know the details, as our " AWESOME "

Gov't is screwing me around as I still can't acquire the hospital records

from when I was admitted for 8-9 days somewhere near Ft. Benning, Ga (not

far from Columbus, Ga) despite a very persistent effort on my behalf.

Thanks, Kirk.

2008/5/26 Fultz :

>

>

--

Everything in life sucks except things that should!

[Guest guest]

I have been looking for this show & have never been able to find it! I

did however catch a show about an Iraq Veteran who drove Dr's nuts with many

crazy symptoms but it turned out to be something else.

I don't know if I ever asked this before, but if ANYONE knows of ANY vets

who were in between 1990-1991 @ Ft. Benning who later became ill (ANY

auto-immune disorders) please let me know the details, as our " AWESOME "

Gov't is screwing me around as I still can't acquire the hospital records

from when I was admitted for 8-9 days somewhere near Ft. Benning, Ga (not

far from Columbus, Ga) despite a very persistent effort on my behalf.

Thanks, Kirk.

2008/5/26 Fultz :

>

>

--

Everything in life sucks except things that should!

[Guest guest]

Hi ,

Do you know the name of the episode on Mystery Diagnosis? I really want to

catch the re-run if I can.

Thanks

Dave

To: Stillsdisease@...: rainofawildflower@...: Mon, 26

May 2008 18:14:41 -0700Subject: mystery diagnoses and AOSD

Did anyone see mystery diagnoses monday night? Women is sick for 4 years and

they finely found out she has AOSD!!! I was watching and I kept saying it sounds

like an attominue disease. She went through hell! Then when they send her to att

last resort RUMMY Dr he sees the salmon color rash on her chest and swallon

fingers. I jumped up in bed and said, " No way Russ are you seeing this? OMG is

this going to be stills? " It has to be and IT WAS!!!!. She started Remicade and

did very well.You should see it if its on again. But the lucky duck did better

unlike some of us.It was cool to see it on tv and my hubby to see how bad we can

feel not just hearing me. Ann Fultz

_________________________________________________________________

Make every e-mail and IM count. Join the i’m Initiative from Microsoft.

http://im.live.com/Messenger/IM/Join/Default.aspx?source=EML_WL_ MakeCount

[Guest guest]

Dear ,

(OT) Sounds like you have a last name that is very

familiar in this part of the Netherlands. Do you have

Dutch ancestors by any chance.

I Googled 'Mystery Dx' and found this hyperlink that

may be of interest for those trying to track down a

running time for the AOSD episode:

http://www.tv.com/mystery-diagnosis/show/69317/summary.html

Good luck! This TV production would be a good thing to

have available as a download for our Still's group, if

possible. This would be especially true for new

spouses, family, and friends who were not fully aware

of what many AOSD patients experience before this

disease retires and goes into remission (but

apparently not all cases).

Cort

--- Budde wrote:

> Hi ,

> Do you know the name of the episode on Mystery

> Diagnosis? I really want to catch the re-run if I

> can.

>

> Thanks

> Dave

>

>

> To: Stillsdisease@...:

> rainofawildflower@...: Mon, 26 May 2008

> 18:14:41 -0700Subject: mystery

> diagnoses and AOSD

>

>

>

>

> Did anyone see mystery diagnoses monday night?

> Women is sick for 4 years and they finely found out

> she has AOSD!!! I was watching and I kept saying it

> sounds like an attominue disease. She went through

> hell! Then when they send her to att last resort

> RUMMY Dr he sees the salmon color rash on her chest

> and swallon fingers. I jumped up in bed and said, "

> No way Russ are you seeing this? OMG is this going

> to be stills? " It has to be and IT WAS!!!!. She

> started Remicade and did very well.You should see it

> if its on again. But the lucky duck did better

> unlike some of us.It was cool to see it on tv and my

> hubby to see how bad we can feel not just hearing

> me. Ann Fultz

>

>

>

>

>

>

>

_________________________________________________________________

> Make every e-mail and IM count. Join the i’m

> Initiative from Microsoft.

>

http://im.live.com/Messenger/IM/Join/Default.aspx?source=EML_WL_

> MakeCount

>

> [Non-text portions of this message have been

> removed]

>

>

> ------------------------------------

>

> 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]

Don't you love the " magic " of t.v.? The woman on the episode is Nissa

Penland. Since then, she's tried MTX, Enbrel, Kineret, and Rituxan

(maybe others?)--so no, no lucky duck--but t.v. likes a happy ending.

She's a member of this group.

in Maine

She started Remicade and did very well.

> You should see it if its on again. But the lucky duck did better

unlike some of us.

> It was cool to see it on tv and my hubby to see how bad we can

feel not just hearing me.

>

> Ann Fultz

>

[Guest guest]

Don't you love the " magic " of t.v.? The woman on the episode is Nissa

Penland. Since then, she's tried MTX, Enbrel, Kineret, and Rituxan

(maybe others?)--so no, no lucky duck--but t.v. likes a happy ending.

She's a member of this group.

in Maine

She started Remicade and did very well.

> You should see it if its on again. But the lucky duck did better

unlike some of us.

> It was cool to see it on tv and my hubby to see how bad we can

feel not just hearing me.

>

> Ann Fultz

>

[Guest guest]

Mystery Diagnosis

Frenetic Genetics  its the one about the nurse she ends up with AOSD

Yes check out Myster diagnoses on Discovery Channel and you can find it

  Ann Fultz

mystery diagnoses and AOSD

Did anyone see mystery diagnoses monday night?  Women is sick for 4 years and

they finely found out she has AOSD!!! I was watching and I kept saying it sounds

like an attominue disease. She went through hell! Then when they send her to att

last resort RUMMY Dr he sees the salmon color rash  on her chest and swallon

fingers. I jumped up in bed and said, " No way Russ are you seeing this? OMG is

this going to be stills? " It has to be and IT WAS!!!!. She started Remicade and

did very well.You should see it if its on again. But the lucky duck did better

unlike some of us.It was cool to see it on tv and my hubby to see how bad we can

feel not just hearing me. Ann Fultz 

_________________________________________________________________

Make every e-mail and IM count. Join the i知 Initiative from Microsoft.

http://im.live.com/Messenger/IM/Join/Default.aspx?source=EML_WL_ MakeCount

[Guest guest]

Mystery Diagnosis

Frenetic Genetics  its the one about the nurse she ends up with AOSD

Yes check out Myster diagnoses on Discovery Channel and you can find it

  Ann Fultz

mystery diagnoses and AOSD

Did anyone see mystery diagnoses monday night?  Women is sick for 4 years and

they finely found out she has AOSD!!! I was watching and I kept saying it sounds

like an attominue disease. She went through hell! Then when they send her to att

last resort RUMMY Dr he sees the salmon color rash  on her chest and swallon

fingers. I jumped up in bed and said, " No way Russ are you seeing this? OMG is

this going to be stills? " It has to be and IT WAS!!!!. She started Remicade and

did very well.You should see it if its on again. But the lucky duck did better

unlike some of us.It was cool to see it on tv and my hubby to see how bad we can

feel not just hearing me. Ann Fultz 

_________________________________________________________________

Make every e-mail and IM count. Join the i知 Initiative from Microsoft.

http://im.live.com/Messenger/IM/Join/Default.aspx?source=EML_WL_ MakeCount

[Guest guest]

Mystery Diagnosis

Frenetic Genetics  its the one about the nurse she ends up with AOSD

Yes check out Myster diagnoses on Discovery Channel and you can find it

  Ann Fultz

mystery diagnoses and AOSD

Did anyone see mystery diagnoses monday night?  Women is sick for 4 years and

they finely found out she has AOSD!!! I was watching and I kept saying it sounds

like an attominue disease. She went through hell! Then when they send her to att

last resort RUMMY Dr he sees the salmon color rash  on her chest and swallon

fingers. I jumped up in bed and said, " No way Russ are you seeing this? OMG is

this going to be stills? " It has to be and IT WAS!!!!. She started Remicade and

did very well.You should see it if its on again. But the lucky duck did better

unlike some of us.It was cool to see it on tv and my hubby to see how bad we can

feel not just hearing me. Ann Fultz 

_________________________________________________________________

Make every e-mail and IM count. Join the i知 Initiative from Microsoft.

http://im.live.com/Messenger/IM/Join/Default.aspx?source=EML_WL_ MakeCount

[Guest guest]

Hey Cort,

Budde is German but I do have ancestors from the netherlands since I am half

Dutch

Dave

To: Stillsdisease@...: cortjohns@...: Tue, 27 May 2008

07:06:05 -0700Subject: RE: mystery diagnoses and AOSD

Dear ,(OT) Sounds like you have a last name that is veryfamiliar in this

part of the Netherlands. Do you haveDutch ancestors by any chance.I Googled

'Mystery Dx' and found this hyperlink thatmay be of interest for those trying to

track down arunning time for the AOSD

episode:http://www.tv.com/mystery-diagnosis/show/69317/summary.htmlGood luck!

This TV production would be a good thing tohave available as a download for our

Still's group, ifpossible. This would be especially true for newspouses, family,

and friends who were not fully awareof what many AOSD patients experience before

thisdisease retires and goes into remission (butapparently not all

cases).Cort--- Budde wrote:> Hi ,> Do you

know the name of the episode on Mystery> Diagnosis? I really want to catch the

re-run if I> can.> > Thanks> Dave> > > To: Stillsdisease@...:>

rainofawildflower@...: Mon, 26 May 2008> 18:14:41 -0700Subject:

mystery> diagnoses and AOSD> > > > > Did anyone see mystery

diagnoses monday night? > Women is sick for 4 years and they finely found out>

she has AOSD!!! I was watching and I kept saying it> sounds like an attominue

disease. She went through> hell! Then when they send her to att last resort>

RUMMY Dr he sees the salmon color rash on her chest> and swallon fingers. I

jumped up in bed and said, " > No way Russ are you seeing this? OMG is this going>

to be stills? " It has to be and IT WAS!!!!. She> started Remicade and did very

well.You should see it> if its on again. But the lucky duck did better> unlike

some of us.It was cool to see it on tv and my> hubby to see how bad we can feel

not just hearing> me. Ann Fultz > > > > > >

>__________________________________________________________> Make every e-mail

and IM count. Join the i’m> Initiative from

Microsoft.>http://im.live.com/Messenger/IM/Join/Default.aspx?source=EML_WL_>

MakeCount> > [Non-text portions of this message have been> removed]> > >

------------------------------------> > 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]

Hey Cort,

Budde is German but I do have ancestors from the netherlands since I am half

Dutch

Dave

To: Stillsdisease@...: cortjohns@...: Tue, 27 May 2008

07:06:05 -0700Subject: RE: mystery diagnoses and AOSD

Dear ,(OT) Sounds like you have a last name that is veryfamiliar in this

part of the Netherlands. Do you haveDutch ancestors by any chance.I Googled

'Mystery Dx' and found this hyperlink thatmay be of interest for those trying to

track down arunning time for the AOSD

episode:http://www.tv.com/mystery-diagnosis/show/69317/summary.htmlGood luck!

This TV production would be a good thing tohave available as a download for our

Still's group, ifpossible. This would be especially true for newspouses, family,

and friends who were not fully awareof what many AOSD patients experience before

thisdisease retires and goes into remission (butapparently not all

cases).Cort--- Budde wrote:> Hi ,> Do you

know the name of the episode on Mystery> Diagnosis? I really want to catch the

re-run if I> can.> > Thanks> Dave> > > To: Stillsdisease@...:>

rainofawildflower@...: Mon, 26 May 2008> 18:14:41 -0700Subject:

mystery> diagnoses and AOSD> > > > > Did anyone see mystery

diagnoses monday night? > Women is sick for 4 years and they finely found out>

she has AOSD!!! I was watching and I kept saying it> sounds like an attominue

disease. She went through> hell! Then when they send her to att last resort>

RUMMY Dr he sees the salmon color rash on her chest> and swallon fingers. I

jumped up in bed and said, " > No way Russ are you seeing this? OMG is this going>

to be stills? " It has to be and IT WAS!!!!. She> started Remicade and did very

well.You should see it> if its on again. But the lucky duck did better> unlike

some of us.It was cool to see it on tv and my> hubby to see how bad we can feel

not just hearing> me. Ann Fultz > > > > > >

>__________________________________________________________> Make every e-mail

and IM count. Join the i’m> Initiative from

Microsoft.>http://im.live.com/Messenger/IM/Join/Default.aspx?source=EML_WL_>

MakeCount> > [Non-text portions of this message have been> removed]> > >

------------------------------------> > 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]

Hey Cort,

Budde is German but I do have ancestors from the netherlands since I am half

Dutch

Dave

To: Stillsdisease@...: cortjohns@...: Tue, 27 May 2008

07:06:05 -0700Subject: RE: mystery diagnoses and AOSD

Dear ,(OT) Sounds like you have a last name that is veryfamiliar in this

part of the Netherlands. Do you haveDutch ancestors by any chance.I Googled

'Mystery Dx' and found this hyperlink thatmay be of interest for those trying to

track down arunning time for the AOSD

episode:http://www.tv.com/mystery-diagnosis/show/69317/summary.htmlGood luck!

This TV production would be a good thing tohave available as a download for our

Still's group, ifpossible. This would be especially true for newspouses, family,

and friends who were not fully awareof what many AOSD patients experience before

thisdisease retires and goes into remission (butapparently not all

cases).Cort--- Budde wrote:> Hi ,> Do you

know the name of the episode on Mystery> Diagnosis? I really want to catch the

re-run if I> can.> > Thanks> Dave> > > To: Stillsdisease@...:>

rainofawildflower@...: Mon, 26 May 2008> 18:14:41 -0700Subject:

mystery> diagnoses and AOSD> > > > > Did anyone see mystery

diagnoses monday night? > Women is sick for 4 years and they finely found out>

she has AOSD!!! I was watching and I kept saying it> sounds like an attominue

disease. She went through> hell! Then when they send her to att last resort>

RUMMY Dr he sees the salmon color rash on her chest> and swallon fingers. I

jumped up in bed and said, " > No way Russ are you seeing this? OMG is this going>

to be stills? " It has to be and IT WAS!!!!. She> started Remicade and did very

well.You should see it> if its on again. But the lucky duck did better> unlike

some of us.It was cool to see it on tv and my> hubby to see how bad we can feel

not just hearing> me. Ann Fultz > > > > > >

>__________________________________________________________> Make every e-mail

and IM count. Join the i’m> Initiative from

Microsoft.>http://im.live.com/Messenger/IM/Join/Default.aspx?source=EML_WL_>

MakeCount> > [Non-text portions of this message have been> removed]> > >

------------------------------------> > 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]

Well I thought she was lucky cause she got better but a fellow stills memeber

emailed me and told me she is not great. TV just likes a happy ending. Sounds

like she hasn't had as great a time as tv made it out to be.  So I'm sorry I

should have thought before talking Im good at that . I didnt know this was a

year ago show Im newer to Stills so I wouldnt  have known  about that show sorry

all.

  Ann Fultz

Re: mystery diagnoses and AOSD

,

Are you talking about the episode with Nissa Penland again? Was she a nurse? She

is one of the members of this list. I think this episode came out last year? Not

sure she feels like a lucky duck, but happy to be diagnosed I'm sure.

Stay Healthy

Palmer

[Guest guest]

Well I thought she was lucky cause she got better but a fellow stills memeber

emailed me and told me she is not great. TV just likes a happy ending. Sounds

like she hasn't had as great a time as tv made it out to be.  So I'm sorry I

should have thought before talking Im good at that . I didnt know this was a

year ago show Im newer to Stills so I wouldnt  have known  about that show sorry

all.

  Ann Fultz

Re: mystery diagnoses and AOSD

,

Are you talking about the episode with Nissa Penland again? Was she a nurse? She

is one of the members of this list. I think this episode came out last year? Not

sure she feels like a lucky duck, but happy to be diagnosed I'm sure.

Stay Healthy

Palmer

[Guest guest]

Well I thought she was lucky cause she got better but a fellow stills memeber

emailed me and told me she is not great. TV just likes a happy ending. Sounds

like she hasn't had as great a time as tv made it out to be.  So I'm sorry I

should have thought before talking Im good at that . I didnt know this was a

year ago show Im newer to Stills so I wouldnt  have known  about that show sorry

all.

  Ann Fultz

Re: mystery diagnoses and AOSD

,

Are you talking about the episode with Nissa Penland again? Was she a nurse? She

is one of the members of this list. I think this episode came out last year? Not

sure she feels like a lucky duck, but happy to be diagnosed I'm sure.

Stay Healthy

Palmer

[Guest guest]

Hi all,

I'm glad the episode is airing again. I just wanted to inspire people to not

give up,when pursuing a diagnosis. That even people in health care, in big

cities don't get the help they should.I feel lucky that I found a great

doctor,with good insight. I wish I could say that all is wonderful,like they

showed at the end of the show. I function pretty darn well,most of the time.I'm

able to work full time in a busy ER. I'm better about conserving my energy. I'm

currently on Rituxan,mtx,lodine,oxycodone,neurontin,and a handful of other

stuff. But,I have never had a remission,ever. I dream of it. The current

struggle is dealing with the after effects of the Rituxan. It pretty much

devastates my GI tract,and anything with a mucus membrane. I'm sorry if that is

too much information. But boy,does it work for the Still's. Everything has a

price,I guess. I have fabulous support in my partner,and friends. But if I have

a big flare that lasts awhile,I tend to start drifting into that black hole of

depression. But I feel very blessed to have found the Still's

site(actually,Darya my partner found it). People here have been suffering quite

a bit recently,and I'm so sorry. You wish you could flip a switch and make it

better. If only! I wish everyone well.

Love,

Nissa Penland,RN from Seattle

To: Stillsdisease

From: rainofawildflower@...

Date: Tue, 27 May 2008 11:41:24 -0700

Subject: Re: mystery diagnoses and AOSD

Well I thought she was lucky cause she got better but a fellow

stills memeber emailed me and told me she is not great.

Re: mystery diagnoses and AOSD

,

Are you talking about the episode with Nissa Penland again? Was she a nurse? She

is one of the members of this list. I think this episode came out last year? Not

sure she feels like a lucky duck, but happy to be diagnosed I'm sure.

Stay Healthy

Palmer

[Guest guest]

Hi all,

I'm glad the episode is airing again. I just wanted to inspire people to not

give up,when pursuing a diagnosis. That even people in health care, in big

cities don't get the help they should.I feel lucky that I found a great

doctor,with good insight. I wish I could say that all is wonderful,like they

showed at the end of the show. I function pretty darn well,most of the time.I'm

able to work full time in a busy ER. I'm better about conserving my energy. I'm

currently on Rituxan,mtx,lodine,oxycodone,neurontin,and a handful of other

stuff. But,I have never had a remission,ever. I dream of it. The current

struggle is dealing with the after effects of the Rituxan. It pretty much

devastates my GI tract,and anything with a mucus membrane. I'm sorry if that is

too much information. But boy,does it work for the Still's. Everything has a

price,I guess. I have fabulous support in my partner,and friends. But if I have

a big flare that lasts awhile,I tend to start drifting into that black hole of

depression. But I feel very blessed to have found the Still's

site(actually,Darya my partner found it). People here have been suffering quite

a bit recently,and I'm so sorry. You wish you could flip a switch and make it

better. If only! I wish everyone well.

Love,

Nissa Penland,RN from Seattle

To: Stillsdisease

From: rainofawildflower@...

Date: Tue, 27 May 2008 11:41:24 -0700

Subject: Re: mystery diagnoses and AOSD

Well I thought she was lucky cause she got better but a fellow

stills memeber emailed me and told me she is not great.

Re: mystery diagnoses and AOSD

,

Are you talking about the episode with Nissa Penland again? Was she a nurse? She

is one of the members of this list. I think this episode came out last year? Not

sure she feels like a lucky duck, but happy to be diagnosed I'm sure.

Stay Healthy

Palmer

[Guest guest]

Nissa, I finally caught the episode and am happy you're still active as I

have been told time & time again that headaches are not a part of Stills,

contradicting everything I've dealt with over the past 4 years along with a

few other members who suffer or have suffered from them.

Have they ever diminished or simply gone away? I've been on every class

of migraine med, Neurontin and others in the Phsyc. class (max doses at

that) and to date have no relief.

Have a good one, Kirk.

2008/5/27 nissa penland :

> Hi all,

>

> I'm glad the episode is airing again. I just wanted to inspire people to

> not give up,when pursuing a diagnosis. That even people in health care, in

> big cities don't get the help they should.I feel lucky that I found a great

> doctor,with good insight. I wish I could say that all is wonderful,like they

> showed at the end of the show. I function pretty darn well,most of the

> time.I'm able to work full time in a busy ER. I'm better about conserving my

> energy. I'm currently on Rituxan,mtx,lodine,oxycodone,neurontin,and a

> handful of other stuff. But,I have never had a remission,ever. I dream of

> it. The current struggle is dealing with the after effects of the Rituxan.

> It pretty much devastates my GI tract,and anything with a mucus membrane.

> I'm sorry if that is too much information. But boy,does it work for the

> Still's. Everything has a price,I guess. I have fabulous support in my

> partner,and friends. But if I have a big flare that lasts awhile,I tend to

> start drifting into that black hole of depression. But I feel very blessed

> to have found the Still's site(actually,Darya my partner found it). People

> here have been suffering quite a bit recently,and I'm so sorry. You wish you

> could flip a switch and make it better. If only! I wish everyone well.

>

> Love,

> Nissa Penland,RN from Seattle

>

>

>

> To: Stillsdisease

> From: rainofawildflower@...

> Date: Tue, 27 May 2008 11:41:24 -0700

> Subject: Re: mystery diagnoses and AOSD

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Well I thought she was lucky cause she got better but a fellow

> stills memeber emailed me and told me she is not great.

>

>

>

> Re: mystery diagnoses and AOSD

>

>

>

> ,

>

>

>

> Are you talking about the episode with Nissa Penland again? Was she a

> nurse? She is one of the members of this list. I think this episode came out

> last year? Not sure she feels like a lucky duck, but happy to be diagnosed

> I'm sure.

>

>

>

> Stay Healthy

>

> Palmer

>

>

>

>

[Guest guest]

Nissa, thanks for checking in. Sorry to hear that you're having such a

hard time with Rituxan, but many thanks again for doing that show.

It's one of those, " See, I'm not making this Still's thing up! "

moments for me and others.

/Maine

>

> Hi all,

>

> I'm glad the episode is airing again. I just wanted to inspire

people to not give up,when pursuing a diagnosis. That even people in

health care, in big cities don't get the help they should.I feel lucky

that I found a great doctor,with good insight. I wish I could say that

all is wonderful,like they showed at the end of the show. I function

pretty darn well,most of the time.I'm able to work full time in a busy

ER. I'm better about conserving my energy. I'm currently on

Rituxan,mtx,lodine,oxycodone,neurontin,and a handful of other stuff.

But,I have never had a remission,ever. I dream of it. The current

struggle is dealing with the after effects of the Rituxan. It pretty

much devastates my GI tract,and anything with a mucus membrane.

>

[Guest guest]

I have to edit a part of my last post to you Nissa, when I said " I'm happy

that you're still active " I was referring to you being active in the group,

I hope I didn't upset you by sounding ignorant and thinking that you were as

you were pre-Stills.

Adios, Kirk

2008/5/27 Kirk Bonanny :

> Nissa, I finally caught the episode and am happy you're still active as I

> have been told time & time again that headaches are not a part of Stills,

> contradicting everything I've dealt with over the past 4 years along with a

> few other members who suffer or have suffered from them.

> Have they ever diminished or simply gone away? I've been on every class

> of migraine med, Neurontin and others in the Phsyc. class (max doses at

> that) and to date have no relief.

> Have a good one, Kirk.

>

> 2008/5/27 nissa penland :

>

>> Hi all,

>>

>> I'm glad the episode is airing again. I just wanted to inspire people to

>> not give up,when pursuing a diagnosis. That even people in health care, in

>> big cities don't get the help they should.I feel lucky that I found a great

>> doctor,with good insight. I wish I could say that all is wonderful,like they

>> showed at the end of the show. I function pretty darn well,most of the

>> time.I'm able to work full time in a busy ER. I'm better about conserving my

>> energy. I'm currently on Rituxan,mtx,lodine,oxycodone,neurontin,and a

>> handful of other stuff. But,I have never had a remission,ever. I dream of

>> it. The current struggle is dealing with the after effects of the Rituxan.

>> It pretty much devastates my GI tract,and anything with a mucus membrane.

>> I'm sorry if that is too much information. But boy,does it work for the

>> Still's. Everything has a price,I guess. I have fabulous support in my

>> partner,and friends. But if I have a big flare that lasts awhile,I tend to

>> start drifting into that black hole of depression. But I feel very blessed

>> to have found the Still's site(actually,Darya my partner found it). People

>> here have been suffering quite a bit recently,and I'm so sorry. You wish you

>> could flip a switch and make it better. If only! I wish everyone well.

>>

>> Love,

>> Nissa Penland,RN from Seattle

>>

>>

>>

>> To: Stillsdisease

>> From: rainofawildflower@...

>> Date: Tue, 27 May 2008 11:41:24 -0700

>> Subject: Re: mystery diagnoses and AOSD

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>> Well I thought she was lucky cause she got better but a fellow

>> stills memeber emailed me and told me she is not great.

>>

>>

>>

>> Re: mystery diagnoses and AOSD

>>

>>

>>

>> ,

>>

>>

>>

>> Are you talking about the episode with Nissa Penland again? Was she a

>> nurse? She is one of the members of this list. I think this episode came out

>> last year? Not sure she feels like a lucky duck, but happy to be diagnosed

>> I'm sure.

>>

>>

>>

>> Stay Healthy

>>

>> Palmer

>>

>>

>>

>>

[Guest guest]

Kirk,

The headaches were really bad when I first got sick. They went away after about

a year. Then I only got headaches with fevers of 101. Then came

Rituxan............and now I get headaches again. I think its a direct side

effect from the drug,but fevers don't help. But I wouldn't classify them as

anything close to migraines,little blessings. I count myself as really lucky to

do as well as I do. I think that if I hadn't gotten Still's I wouldn't have the

happy life that I call my own. I would have stayed in an unhealthy and abusive

marriage. Never been brave enough to " come out " ,and eventually find the love of

my life. I still occassionally push myself too hard,only to get sick as hell.

And I have to really manage the stress in my life. I can handle physical

stress,far better than emotional. And asking for help is still a problem of

mine. I'm always annoyed when I happen to be limping at work,only to have some

idiot tell me I'm too young to have arthritis. I hope your headaches get

better,and I'm glad you liked the show.

Thanks,

Nissa

To: Stillsdisease

From: kbonanny@...

Date: Tue, 27 May 2008 17:50:35 -0400

Subject: Re: mystery diagnoses and AOSD

Nissa, I finally caught the episode and am happy you're still

active as I

have been told time & time again that headaches are not a part of Stills,

> Love,

> Nissa Penland,RN from Seattle

>

>

>

> To: Stillsdisease

> From: rainofawildflower@...

> Date: Tue, 27 May 2008 11:41:24 -0700

> Subject: Re: mystery diagnoses and AOSD

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Well I thought she was lucky cause she got better but a fellow

> stills memeber emailed me and told me she is not great.

>

>

>

> Re: mystery diagnoses and AOSD

>

>

>

> ,

>

>

>

> Are you talking about the episode with Nissa Penland again? Was she a

> nurse? She is one of the members of this list. I think this episode came out

> last year? Not sure she feels like a lucky duck, but happy to be diagnosed

> I'm sure.

>

>

>

> Stay Healthy

>

> Palmer

>

>

>

>

[Guest guest]

Kirk,

The headaches were really bad when I first got sick. They went away after about

a year. Then I only got headaches with fevers of 101. Then came

Rituxan............and now I get headaches again. I think its a direct side

effect from the drug,but fevers don't help. But I wouldn't classify them as

anything close to migraines,little blessings. I count myself as really lucky to

do as well as I do. I think that if I hadn't gotten Still's I wouldn't have the

happy life that I call my own. I would have stayed in an unhealthy and abusive

marriage. Never been brave enough to " come out " ,and eventually find the love of

my life. I still occassionally push myself too hard,only to get sick as hell.

And I have to really manage the stress in my life. I can handle physical

stress,far better than emotional. And asking for help is still a problem of

mine. I'm always annoyed when I happen to be limping at work,only to have some

idiot tell me I'm too young to have arthritis. I hope your headaches get

better,and I'm glad you liked the show.

Thanks,

Nissa

To: Stillsdisease

From: kbonanny@...

Date: Tue, 27 May 2008 17:50:35 -0400

Subject: Re: mystery diagnoses and AOSD

Nissa, I finally caught the episode and am happy you're still

active as I

have been told time & time again that headaches are not a part of Stills,

> Love,

> Nissa Penland,RN from Seattle

>

>

>

> To: Stillsdisease

> From: rainofawildflower@...

> Date: Tue, 27 May 2008 11:41:24 -0700

> Subject: Re: mystery diagnoses and AOSD

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Well I thought she was lucky cause she got better but a fellow

> stills memeber emailed me and told me she is not great.

>

>

>

> Re: mystery diagnoses and AOSD

>

>

>

> ,

>

>

>

> Are you talking about the episode with Nissa Penland again? Was she a

> nurse? She is one of the members of this list. I think this episode came out

> last year? Not sure she feels like a lucky duck, but happy to be diagnosed

> I'm sure.

>

>

>

> Stay Healthy

>

> Palmer

>

>

>

>

[Guest guest]

Nissa,

It was kind of crazy watching the show....it was almost as if I was reliving two

years of my life again. I had been diagnosed with lymphoma as well due to all of

the inflammations in my body, however further testing proved that was not the

case. Me and my fiance watched the show and it literally gave us both the

chills. I truly agree with you when you say that you wouldn't have the life you

have now if you hadn't gotten still's. I feel that I have a whole new outlook on

life with still's and I realized just how precious life really is and how we

take advantage of it. I have the headaches as well and mostly with fever but I

do notice that when I feel just the least bit stressed the headaches return with

a vengeance. I am the one in my family that handles everything and for everyone

and I am just too stubborn to pass the torch down to someone else because I like

to make sure things are done right and I just can't let that go.....I guess I

should try

it sometime as it is not worth the headaches, fevers and flares.

Anyways, I just wanted to say  " Thanks " for getting the word out about Still's

and for being so incredibly brave.

Love and Care,

Angie

Los Angeles, CA 

Re: mystery diagnoses and AOSD

>

>

>

> ,

>

>

>

> Are you talking about the episode with Nissa Penland again? Was she a

> nurse? She is one of the members of this list. I think this episode came out

> last year? Not sure she feels like a lucky duck, but happy to be diagnosed

> I'm sure.

>

>

>

> Stay Healthy

>

> Palmer

>

>

>

>

[Guest guest]

Hi Carole,

I haven't watched the mystery diagnosis but I do remember way back, say in

1995 or 1996 when we were just forming the group, that there may have been one

or two members who did well with a type of aspirin therapy.

I think the problem was that it took large doses to get the inflammation

process down and it caused some other issues......

Beth

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