Re: how long before the world comes crashing back down?

November 30, 2010

,

{(This is a long e-mail and only my unique story and your son will have his own

unique story....some had it alot worse than I while others will have one flare

and never have another....I hope this for your son. My story isnt' meant to say

this is what is going to happen but to try and illustrate the fact that stress

mental and physical will make a big difference on the progression of Still's or

any Auto-Immune Disease. If you know that an event will lead to either kind of

stress and you can lessen that stress it will greatly help the re occurence of

any flares either be reduced in severity or at least how often it happens.

Everyone is different and it depends on how your body can fight the disease as

well as how the person can handle stress I obviously was not very good at

it...lol)}

I can understand to a point why the doctors are upset that the Steroids are

covering up the symptoms however, my Rheumy got to see my symptoms full force

and I was still put on prednisone...lol If you son was sick with high fevers and

his sed rate 56 and then later 76 then (mine was 88) the prednisone was the

right thing to do. The specialist can still figure out what is going on if

anything else other than stills by checking for antibodies in the blood. My

liver was messed up from my last flare I was put on pred by time the Rheumy did

the blood tests (the next appointment) to check for other auto-immune disease my

liver enzymes were all back to normal! However she still tested for antibodies

if there is another auto-immune issue and you have a good dr. they will figure

it out as mine did.

I was just diagnosed about 1 month and 1/2 ago. However I think my first

Still's flare was when I was 4yrs old I am now 25. As I child I would say I

flared probably a couple times a year once in the summer and a few times in the

winter months.

I think my still's went into remission in Adult hood but came back after and re

on-setted when I had a major jaw surgery that occurred 2 years ago the day

before Thanksgiving.

I seemed to be getting sick like every other month. Sept of 2009 I went back to

school. At the age of 24 I had a really bad flare during a Poker Tournament

that took place over the New Years. I was helping run it, and it lasted for 4

days and it took me a week to get over the fevers. (this whole time since my

surgery I had been seeing an ortho hand surgeon for what I was told was a torn

ligament in my right hand) I thought I had an allergic reaction to the hotels

sheets and poker chips also many people had sinus infections. Soon to follow I

had many stressful events that occurred that I think caused the Adult-Onset

Still's Disease (the still's disease to come back or worsen) Too much to get

into...lol

Then at the end of February of 2010 my life really came crashing down.

-Between School

-A fight to keep my SSI

-A new 20 hr a week internship and 18 cr hours of school

-At the same time My Grandmother ended up in the hospital with a suspected Heart

Attack.

-My own health decline as well as my mother

-Father getting his second divorce (needing me as his support)

In the month of March I started having re occurring low grade fevers on an every

day basis they continued until I was put on Prednisone back when I was diagnosed

in October.

Also with the fevers I started having bizarre symptoms horrible acid-reflux. My

hands started shaking and trembling. I started getting horrible charlie horses

in both of my legs in the middle of the night even if I just stretched my leg

the tiniest bit.

I went to my Internist probably 6 to 8 times between March and September of

that year. Never even realizing I was 99 or above every time I went to see my

doctor. He did take a gazillion blood tests and everything was always normal in

fact it always was until I got my 2nd opinion on my hand at a different

hospital. End of April my bone doctor told me he didn't think that my torn

ligament was bad enough for surgery and that I had no arthritis (he never took

temps or blood tests) He told me he thought I was a surgery seeker straight to

my face. I figured something was wrong and went to get a second opinion.

I didn't get it until September. He decided to do a second MRI when I came back

for the MRI reading he said there was nothing wrong with it but swelling. He did

a steroid shot into my hand said he was gonna do some blood tests and if the

pain went away there was a small scope surgery he could do to clean it up if not

he said it may be an inflammatory problem. Back Then I didn't know RA was

inflammatory auto-immune disease.

They did blood tests I had low White Blood Count High Neutrophils. and Low

Lymphocytes. and a positive RH Factor. I was referred to a Rheumatologist and

told there was no need to keep my appointment with the Bone doctor so they

canceled it on me..lol

-In June I decided to work part-time for J.C. Pennies (I was over achieving I

wanted a car for my 25th B-Day (With Still's you have to learn you limits and a

good balance what is worth a possible flare in they do re-occur and what isn't

if I would of known then I had still's I wouldn't have done it)

__From this I got horrible shin pains and feet pains.

Right here I was September it took till Oct 11 to get Rheumy appointment.

-In September I took a vacation about a 6 hour car ride there and back.

__After coming home I noticed my knees were super stiff.

-Then in October my boyfriend and I had a dream trip planned to fly to New York

this is when I got my sickest yet

__106 degree daily fevers by the end of the 4 day trip I couldn't walk

__Horrible sore throats (could barely speak) I also had this on and off before

as well.

I saw my Rheumy for the first time 2 days after I got back she figured it all

out at first she gave me just an anti-inflammatory and told me she thought I had

Juvenile Rheumatoid Arthritis my temp was only 103 when I saw as it was during

the day. When she got my blood results back she diagnosed me with Still's

Disease AOSD (adult-onset) Next time I saw her she addressed my liver issues I

am now awaiting to see a GI doctor as I tested positive for another antibody for

an auto-immune called PBC (primary biliary cirrhosis) doesn't mean cirrhosis yet

just mean it can lead to it I will not know anything for another 2 weeks.

Prednisone was the only thing that got me out of my horrible flare.

Like I said before this is just my story there are no answers to how long he'll

have to another flare maybe eternitym it could be until he catches his first

cold but I hope my story can show the progression for me at least

aka Jalee

One in a Million

December 1, 2010

Â

O.

Â As others have said there really is no way to tell as each case and person is

deferent. In my case the first flair and hardest one to date lasted for over 2

years. More like 3 to be honest and then I slowly very slowly slipped into a

remission for a few years and now that is gone and I am back to active stills

again along with other Auto things but no were near what they were at the start.

Â Now some only have one flair and that is it and I hope this is your case but

others like my self go from flair to remission back to flair and some never see

a remission at all.

Â

you did say one thing that caught my eye you said your son also now has some

clotting problems also that you feel or the doctors feel are still related. No

if I read that right may I ask what kind of problems as I also have developed

clotting problems and they have now labeled it anti lupus coagulant dieses. The

just means it is not lupus and that I do not have problems clotting but in fact

I clot way too easy. Itâ€™s new to me and only showed up in the last year or so

but hints may have been around shortly after I started my stills trip. I would

throwÂ some low Platelet countsÂ at first not to low but below normal and now

days

they can drop way low to the point of big time worry. only thing they have me

doing for it is taking a baby aspirin a day to help thin the blood so it will

flow better but my counts still go up and down but never into the normal range.

Â

any way wish I could wave a wand or some thing and tell you its all gone and all

will be okay as to me I hate the thought of a child with this as I would be

willing to take even more from stills to have it leave a child alone but then

again they now think I may have had it from the age of about 4 on and I did live

a some what normal childhood getting into all kinds of predicaments and such and

raised a lot ofÂ HE(double hockey sticks). The only thing I do remember from

growing up that was not normal was how often I would get sick and how fast. Okay

in the am and sick as a dog in the after noonÂ or the same but turned around. my

parents thought I was faking trying to just get out of school but even as an

adult it still went on and costed me a few jobs along the way because I missed

to much work but I can say I never really played sick to stay home or do

something because I simply got sick to much to do that .Now not working and

staying how I get sick a lot less that isÂ tell some one brings a bug home then

I

get to share it with them LOL.

Â

Any hoot all my best and hugs to you bothÂ

Â

The Redneck

Marty G.

Be careful about reading health books. You may die of a misprint.

Mark Twain

I don't give a damn for a man that can only spell a word one way.

Mark Twain

December 2, 2010

Hi everyone,

I didn't catch 's original message but Marty's message regarding his

blood coagulation being very fast registered with me. My blood also clots too

quickly - a real problem with IVs. I had never thought of it being another

anomaly in the Still's family so I have never raised it as a question with my

docotors. I just always make sure I tell the nurse if I have an IV. I wondered

if anyone else had this experience too? Thanks Marty for sharing your

experience and mentioning the platelets. I will have a check of my last bloods

to see what they were.

Wishing everyone well, and thank you as ever for your support.

Francesca