Re: First Introduction: Dr. econ. C.J. (b. 31 January 1944)

April 5, 2008

What a story? And with that said I wish to welcome you to our Family of

Stilligans. My name is Bob Himes and I am the Secretary/Treasurer of the

Stills Disease Foundation. There are many people on this forum who can tell

almost the same story. Lately there are folks joining us that have waited

weeks to months for a DX and think that is long and to them it is. And I

wish that on no one. We are finally educating enough people including

Doctors that we are finally getting ahead of the game. Now if we could only

get some major research done I think it would make all of us very happy. We

will keep trying! Take care, be PAIN FREE! Love Ya'll!

" WE WILL WIN "

Bob

Love Ya'll!

" Never Fight Fair "

-- First Introduction: Dr. econ. C.J. (b. 31 January

1944)

Greetings to my fellow support group challenged with

AOSD + FMS et al.

My SD story goes back to 1950 when I was 7. That's

when my medical mystery of misery first surfaced. I

had a fever with other lab tests that didn't add up

and so was referred to Baptist Hospital in

Winston-Salem, N.C.

It wasn't until I was 16 or 17 that I started having

recurrent attacks of spasms in my throat often being

suddenly awaken in the middle of the night gasping for

breath, a kind of panic as in drowning. Further

testing occurred after I started my freshman year at

the University of Michigan, still with no diagnosis.

However, these medical events were only prologue to

what was going to take place being at the age of 29.

In the summer of 1973 I went to Charlottesville, VA to

place golf and again came down with an idiomatic

fever. First it was thought that it was Lyme disease

or tuberculosis, but never could be definitely

determined. Then suddenly I became so sensitive in my

fingers and left foot that I experienced incredible

electrical-like shock even if I only tried to dial my

phone (yes, we still had dialing phones back then).

Then the spiking temperatures began--typical Still's

presentation 104¼ Fahrenheit (40¼C). This went on for

70 days with a SED rate in the 90's and a Red blood

count under 7. First I was placed in Jennings Hospital

in Detroit and then at Cottage Hospital in Grosse

Pointe Farms, MI.

After that I was transferred to their intensive care

unit. My wife and parents were told that I most likely

die there. Diagnosis still unknown. Next I was sent to

the Wayne State University Medical Center with more

testing. One night around midnight two MD interns

showed up to try and freeze the fever out of me. They

applied ice packs all over my body for about 30 to 40

minutes. This was pure torture. They were about to

perform a laperatomy to just go into my gut to have a

look for something unusual, but fortunately my fever

broke.

Nonetheless, was then transferred to the University

of Michigan's Medical Center for further testing.

And did they give me what seemed like ever test in

their inventory! Blood test's twice a day, a second

spinal tap, a second bone marrow, a liver biopsy, a

nodal cyst and skin biopsy, a sigmoidoscopy and

cystoscopy, and all sorts of X-rays, plus endless

urine and stool samples sent to pathology, etc. There

were often times when I wished the doctors had been

right while I was in intensive care back in Grosse

Pointe Farms!

It seems that one is endowed by nature or nurture with

a medical mystery, then one's case also seems to be

taken over by the hospital's or medical staff's Chief

of Staff. Lucky me. There seems to be some correlation

between being cared for by the top physician and the

number of medical tests applied.

So after 2 weeks of medical testing hell, the Chief of

Staff comes to my hospital room and tells me that they

finally have a diagnosis, but it's bad news. He says

that I have Hodkins disease. I cried for two days,

before, not the Chief, but a staff doctor comes in to

tell me that pathology made a mistake. Upon

re-examination of my skin biopsy, there was, indeed,

no Hodkins.

However, this bright young Dr. Clifford Lane, said I

think what you have is Still's disease. I had never

heard of this disease; nor had any of the literally

dozens and dozens of physicians who had reviewed my

case ever mentioned it before. However, after more

than 3 years of only hearing 'fever of unknown

origin', it was a relief to hear that my condition had

had a precedent elsewhere.

My medical hospitalization was not at an end, but the

torturous testing had come to an end.

The medical authorities in Ann Arbor had apparently no

previous experience with Still's so they referred me

to the National Institutes of Health in Bethesda, MD

to confirm it was Still's. Again, of course, to be

handled by their Chief of Staff for Infectious

Diseases.

I think that I will stop my story here, although I

should add that while I was going in and out of

hospitals and medical centers, I managed to get

married, finish my MBA, pass my CPA, and eventually by

1978 have 2 healthy children and be promoted 3 times

at work.

Thanks for taking the time to read my story,

Dr. econ. C.J.

__________________________________________________________

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April 5, 2008

Welcome to the family. What history you have had a lot of pain and

frustration but you survived. Hope you will find us helpful. Most of us

get a great deal of help and comfort within our group.

Best wishes

Joan U.K.

April 5, 2008

Thanks Bob for your kind note.

You are absolutely right about physician education.

Perhaps, I would like to think that computer programs

will help in the DX dilemma. Maybe if SD could be DXed

earlier, the residual later effect such as my past 11

years struggle with fibromyalgia, etc.

In fairness to most doctors there are so many rare and

socalled 'orphan' diseases that most like Still's get

little more treatment than a footnote at best in

medical texts. Computers can handle these rare

exceptions better than humans, if properly programmed

to begin with. The other side of the coin is getting

around physician's egos to actually accept referring

to a computer system when ideomatic cases arrive. The

U.S. medical mentality is well known for its

aggressive approach and willingness to use rather

harsh medications or even experiment first. This

happened in my case in the beginning weakening my

system to the point of exhaustion due to too many very

strong injections such as kevlex and kantrex.

I'm not bitter about what has taken place, but I would

feel better knowing that these kind of mistakes are

not too often repeated. Doctors are human and not

gods, but are dealing with too many varieties of

illness and human bodies that refuse one diagnosis

fits all approaches to medical treatment.

Kind regards and thank you again,

Cort

--- Bob Himes wrote:

> What a story? And with that said I wish to welcome

> you to our Family of

> Stilligans. My name is Bob Himes and I am the

> Secretary/Treasurer of the

> Stills Disease Foundation. There are many people on

> this forum who can tell

> almost the same story. Lately there are folks

> joining us that have waited

> weeks to months for a DX and think that is long and

> to them it is. And I

> wish that on no one. We are finally educating enough

> people including

> Doctors that we are finally getting ahead of the

> game. Now if we could only

> get some major research done I think it would make

> all of us very happy. We

> will keep trying! Take care, be PAIN FREE! Love

> Ya'll!

>

> " WE WILL WIN "

> Bob

> Love Ya'll!

> " Never Fight Fair "

> -------Original Message-------

________________________________________________________________________________\

____

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April 5, 2008

Thanks Bob for your kind note.

You are absolutely right about physician education.

Perhaps, I would like to think that computer programs

will help in the DX dilemma. Maybe if SD could be DXed

earlier, the residual later effect such as my past 11

years struggle with fibromyalgia, etc.

In fairness to most doctors there are so many rare and

socalled 'orphan' diseases that most like Still's get

little more treatment than a footnote at best in

medical texts. Computers can handle these rare

exceptions better than humans, if properly programmed

to begin with. The other side of the coin is getting

around physician's egos to actually accept referring

to a computer system when ideomatic cases arrive. The

U.S. medical mentality is well known for its

aggressive approach and willingness to use rather

harsh medications or even experiment first. This

happened in my case in the beginning weakening my

system to the point of exhaustion due to too many very

strong injections such as kevlex and kantrex.

I'm not bitter about what has taken place, but I would

feel better knowing that these kind of mistakes are

not too often repeated. Doctors are human and not

gods, but are dealing with too many varieties of

illness and human bodies that refuse one diagnosis

fits all approaches to medical treatment.

Kind regards and thank you again,

Cort

--- Bob Himes wrote:

> What a story? And with that said I wish to welcome

> you to our Family of

> Stilligans. My name is Bob Himes and I am the

> Secretary/Treasurer of the

> Stills Disease Foundation. There are many people on

> this forum who can tell

> almost the same story. Lately there are folks

> joining us that have waited

> weeks to months for a DX and think that is long and

> to them it is. And I

> wish that on no one. We are finally educating enough

> people including

> Doctors that we are finally getting ahead of the

> game. Now if we could only

> get some major research done I think it would make

> all of us very happy. We

> will keep trying! Take care, be PAIN FREE! Love

> Ya'll!

>

> " WE WILL WIN "

> Bob

> Love Ya'll!

> " Never Fight Fair "

> -------Original Message-------

________________________________________________________________________________\

____

You rock. That's why Blockbuster's offering you one month of Blockbuster Total

Access, No Cost.

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April 5, 2008

Greetings Joan,

Thanks for your kind words. One thing that I might

mention is that I am a displaced Yank expatriate.

After my SD raised its ugly head again in 1979 and

1980, I was advised by my rheumatologist to move to

Arizona, which I did. My medical insurances never

adequately covered my bills and I often was not able

to afford certain newer medications that might have

been promising.

However, I was fortunate enough to have had the

opportunity to visit a very fine University in St.

Gallen Switzerland. Much to my surprize they asked me

if I had a master's degree and would like to take my

doctorate in economics there. Having been on

disability for some 8 years, I decided to give it a

try and 5 years later defended my dissertation and

career possibilities. There I found out that my

medical condition would be adequately covered through

my grad student health insurance.

Now living in the Netherlands, even having had a 5

year stint teaching in one Dutch and British

University, SD came back again with the extra

challenge of fibromyalgia as a kicker. Nonetheless, my

potential pain and suffering have been greatly

assuaged by the great health insurance and medical

care I have received here for a small fraction of the

cost I would have had to pay back in the states.

After viewing 's 'Sicko' I doubt that I

still would be alive today had I stayed in the U.S.! I

am able to make use of prescription medicine that

would have cost more than 50% of what my disability

income would be stateside.

I still believe in America, but find that the

estimated three trillion ($3,000,000,000,000) that

will have been spent on the wars in Iraq and

Afghanistan could have been better used caring for our

own. But I know that I must be 'preaching to the

choir' on this point. We were all much better off

during the Clinton years from my standpoint.

I'll stop there. It's just difficult to think that I

had to leave my country to be able to afford to

complete my education ($100 a semester in Switzerland

without any student loans!) and receive full medical

and dental care without having to re-mortgage my home.

Kind regards,

Cort

--- Joan UK wrote:

> Welcome to the family. What history you have had a

> lot of pain and

> frustration but you survived. Hope you will find us

> helpful. Most of us

> get a great deal of help and comfort within our

> group.

>

> Best wishes

>

> Joan U.K.

>

> [Non-text portions of this message have been

> removed]

>

________________________________________________________________________________\

____

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April 5, 2008

Welcome Cort

Boy I can relate to much of what you said about your self. some times when i

look back I get mad at my self because i did not want to live then Either. the

test after test after test was just getting to be to much and no one knew what I

had. like you I know believe this also started when I was young around the age

of 4 ( was hospitalized back then and no one knew for sure what i had . later in

life had tonsils taken out because tey were always bad and the thought was it is

why I ran such high fevers. then at 42 I was dx after many er visits and

intensive care stays . I also had to leave my home ( Idaho at the time ) and

went to Stanford med center Calif. there DR dx me the second day using

all the test done back in Idaho and some they did . he also told the inter with

him to pay atinchen as this could be the only case he would ever see in his life

as a doctor. Any hoot like you the stills is bad enough but then adding all the

side fun and games

is killer. I can say I have post stills remarried ( x could not deal with it

after 19 years married and 26 years with her). I have a great son and step kids

and a wife that See's past the stills me and only See's the man me and that is a

great comfort. well just wanted to say welcome and the door is always open here

at the home of this family as some one is one almost any time of day or night I

know I am one of then that ya never know when I am here lurking

the redneck

Marty

" The right of a citizen to bear arms, in lawful defense of himself or the State,

is absolute. He does not derive it from the State government. It is one of the

" high powers " delegated directly to the citizen, and 'is excepted out of the

general powers of government.' A law cannot be passed to infringe upon or impair

it, because it is above the law, and independent of the lawmaking power. "

[Cockrum v. State, 24 Tex. 394, at 401-402 (1859)]

" This year will go down in history. For the first time, a civilized nation has

full gun registration! Our streets will be safer, our police more efficient, and

the world will follow our lead into the future. " Adolf Hitler, 1935

" Waiting periods are only a step. Registration is only a step. The prohibition

of private firearms is the goal. " Janet Reno

as United States attorney general in the Clinton white house (now do we really

want Hillary there to?)

" We can't be so fixated on our desire to preserve the rights of ordinary

Americans... " Bill Clinton

Stills ; An illness I know to well!

To learn about Stills http://www.stillsdisease.org/stills_info

Edited By Moderator!

________________________________________________________________________________\

____

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April 5, 2008