New member

[Guest guest]

Thanks Marilyn. Good health to you.

Hugs,

DianeMarilyn Hogg wrote:

Diane it is great to meet you and welcome to our group although the circumstances are unfortunate. I'm glad to hear that the prednisone is working well for you and I hope you continue to feel better. It must have been a horrible time being so sick for so many months and not knowing why. You will find many in this group that have suffered the same ordeal when it comes to diagnosis as you did. I hope that we will be able to help you with information and questions and perhaps we could learn something from you as well.

Take care,

Marilyn

mhogg69@...

Canada

----Original Message Follows---- My name is Diane Tarrant. Last year was one of the worst years of my life. I was sick from the end of April through November 2003 until they finally diagnosed me with STills Disease. I ended up in the hospital for 8 days the beginning of May. I had 102 to 104 fever from May through November with some relief, but most days I had a high fever. They thought I had a reaction to a statin drug for high cholesterol, then they thought I had mono. I was never improving, so then they sent me to an infectious disease doctor who ran every test in the book, then in Nov 03, that doctor sent me to a rheumatologist. Bingo; Still's Disease.

Diane from Dallas

Share a single photo or an entire slide show right inside your e-mail With MSN Premium Get 2 Months FREE* 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]

Hello Stilligans,

I got officially diagnosed with Still's about a month ago. From what

I've been reading in the messages and on the web, it sounds like I've

got a pretty mild version of it (so far). The various specialists

hunted and pecked for over six months trying to figure out what was

causing my symptoms: fevers (spiking over 102 early on, but later

only hitting 101 or so), night sweats, joint stiffness (shoulders and

knees), fatigue - LOTS of fatigue, lack of concentration, elevated

SED rate. Nothing that sent me to the hospital, though.

They basically ruled out everything else and called it Still's - in

part because I was diagnosed with JRA in 1980 (though that

disappeared without a trace within a month after leaving the hospital

and hadn't returned). When the doctors were searching this time

around, they tried to treat the symptoms with just aspirin. It

didn't help much but wreaked havoc on my stomach. Then they moved me

on to Indocine (along with Prylosec) once they figured it was likely

a rheummy issue (but before all the infectious disease tests were

in). That helped more, but some of the more annoying symptoms still

hung around. Once we decided that this was Still's, we moved on to

Prednisone. After 3 weeks of 40 mg / day, nearly all the symptoms

are gone and we're starting to ramp down (today was the first day of

30 mg / day). I've also been gobbling up flax seed oil and ginger

(not together!) to help with inflamation, along with extra vitamin B,

C, D, magnesium, calcium, iron, zinc, and a multivitamin.

My problem now is just some residual fatigue and knee issues. After

fighting fevers for six months, I'm not surprised I'm still tired -

mid-day naps seem to cure that. The RD says that the problem in the

right knee (an occasional catching or jamming of the joint when

walking - kind of like a pebble gets stuck in the joint) is just

because it was inflamed for so long that it'll take time for the

joint to tighten back up and the tendons to not slip around. I'm a

bit skeptical, but we'll see. Unfortunately, my left knee is

starting to stiffen up - probably because I've been favoring the

right (though the feeling is the same as when the right knee started

having problems, which scares me a bit). I'm hoping to start some

physical therapy next week.

That's pretty much been my experience so far. Thanks for setting up

this support group!

Cheers,

[Guest guest]

Welcome ;

I'm so glad you have a milder disease but I know it still hurts and is hard to live with. The best of luck with the Prednisone reduction.

My nickname is Melt or . I've had Stills a long, long time but do pretty well these days. Mine is in remission.

We look forward to knowing you and having you as part of the family here.

Smiles, Melt

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

From: andrew_b_cooper I got officially diagnosed with Still's about a month ago.

[Guest guest]

,

Welcome to the island..... I am a recent dx but only suffered with the symtoms for almost 17yrs, until recent flare in the fall that sent them looking deeper. I just got out of the hospital last week from a major flare up. And now starting the process of getting better. It's frustrating but it does get better. Right nowI am awake more during the evenings and early mornings. ButI still am very fatiqued and sore beyond what is considered "flu" like. The fevers are starting to drop back below the 100 mark but the night sweats and joint stiffness and pain are what gets me more than anything. Like the doctor told me undoing 17-20 years of damage will take a while.

Anyhow, Welcome to the island and you have found a truely awesome family.

HUGS and Snuggles................

Tracilyn

-----Original Message-----From: andrew_b_cooper Sent: Monday, July 05, 2004 3:45 PMTo: Stillsdisease Subject: New memberHello Stilligans,I got officially diagnosed with Still's about a month ago. From what I've been reading in the messages and on the web, it sounds like I've got a pretty mild version of it (so far). The various specialists hunted and pecked for over six months trying to figure out what was causing my symptoms: fevers (spiking over 102 early on, but later only hitting 101 or so), night sweats, joint stiffness (shoulders and knees), fatigue - LOTS of fatigue, lack of concentration, elevated SED rate. Nothing that sent me to the hospital, though.They basically ruled out everything else and called it Still's - in part because I was diagnosed with JRA in 1980 (though that disappeared without a trace within a month after leaving the hospital and hadn't returned). When the doctors were searching this time around, they tried to treat the symptoms with just aspirin. It didn't help much but wreaked havoc on my stomach. Then they moved me on to Indocine (along with Prylosec) once they figured it was likely a rheummy issue (but before all the infectious disease tests were in). That helped more, but some of the more annoying symptoms still hung around. Once we decided that this was Still's, we moved on to Prednisone. After 3 weeks of 40 mg / day, nearly all the symptoms are gone and we're starting to ramp down (today was the first day of 30 mg / day). I've also been gobbling up flax seed oil and ginger (not together!) to help with inflamation, along with extra vitamin B, C, D, magnesium, calcium, iron, zinc, and a multivitamin.My problem now is just some residual fatigue and knee issues. After fighting fevers for six months, I'm not surprised I'm still tired - mid-day naps seem to cure that. The RD says that the problem in the right knee (an occasional catching or jamming of the joint when walking - kind of like a pebble gets stuck in the joint) is just because it was inflamed for so long that it'll take time for the joint to tighten back up and the tendons to not slip around. I'm a bit skeptical, but we'll see. Unfortunately, my left knee is starting to stiffen up - probably because I've been favoring the right (though the feeling is the same as when the right knee started having problems, which scares me a bit). I'm hoping to start some physical therapy next week.That's pretty much been my experience so far. Thanks for setting up this support group! Cheers,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]

Wecome . I'm a new member, too, since last week. I've had every symptom you've had plus more. I suffered for 7 months last year before diagnosed in the middle of November 03. I'm now on Prednisone and am doing much better. I'm on 15 mg. I'm also on Methotextrate just for a few weeks now and will start soon to decrease the Prednisone so I can hopefully get off of that. Take care.

Hugs to all from Diane/Dallas, TXandrew_b_cooper wrote:

Hello Stilligans,I got officially diagnosed with Still's about a month ago. From what I've been reading in the messages and on the web, it sounds like I've got a pretty mild version of it (so far). The various specialists hunted and pecked for over six months trying to figure out what was causing my symptoms: fevers (spiking over 102 early on, but later only hitting 101 or so), night sweats, joint stiffness (shoulders and knees), fatigue - LOTS of fatigue, lack of concentration, elevated SED rate. Nothing that sent me to the hospital, though.They basically ruled out everything else and called it Still's - in part because I was diagnosed with JRA in 1980 (though that disappeared without a trace within a month after leaving the hospital and hadn't returned). When the doctors were searching this time around, they tried to treat

the symptoms with just aspirin. It didn't help much but wreaked havoc on my stomach. Then they moved me on to Indocine (along with Prylosec) once they figured it was likely a rheummy issue (but before all the infectious disease tests were in). That helped more, but some of the more annoying symptoms still hung around. Once we decided that this was Still's, we moved on to Prednisone. After 3 weeks of 40 mg / day, nearly all the symptoms are gone and we're starting to ramp down (today was the first day of 30 mg / day). I've also been gobbling up flax seed oil and ginger (not together!) to help with inflamation, along with extra vitamin B, C, D, magnesium, calcium, iron, zinc, and a multivitamin.My problem now is just some residual fatigue and knee issues. After fighting fevers for six months, I'm not surprised I'm still tired - mid-day naps seem to cure that. The RD says that the problem in the right knee (an occasional

catching or jamming of the joint when walking - kind of like a pebble gets stuck in the joint) is just because it was inflamed for so long that it'll take time for the joint to tighten back up and the tendons to not slip around. I'm a bit skeptical, but we'll see. Unfortunately, my left knee is starting to stiffen up - probably because I've been favoring the right (though the feeling is the same as when the right knee started having problems, which scares me a bit). I'm hoping to start some physical therapy next week.That's pretty much been my experience so far. Thanks for setting up this support group! Cheers,

[Guest guest]

Carolyn, I will when I get home tonight (fb blocked from school servers).

Sherri

15:5 I am the vine; you are the branches. If a man remains in me, and I in him, he will bear much fruit; apart from me you can do nothing.

To: autism-aspergers Sent: Monday, September 26, 2011 10:42 AMSubject: Re: New MemberIf anybody wants to find me on Facebook, my name is Carolyn Harper. There are several, I am the one in Springfield, Oregon with the gray hair.Hope you do! Need more friends!Carolyn ;o)Carolyn wrote:> Hi Mimi, I would like to welcome you

to the group also. I have been > writing for a long time, am the mother to a 47 year old severely > disabled boy, Marty, I take care at home. He has had seizures all his > life, is non verbal and on a food tube and Depends, and has many other > things, one of which is autism. He's a sweetheart. Right now he has a > broken collar bone from falling down we have to take special care with.>> Last year we learned my youngest grandchild Lucas, who is 7 in 2nd > grade, has Aspergers. He has always been rather quirky and moody at > times and other times is such a sweetheart. He did not do well in his > school work last year in 1st grade because he felt uncomfortable in the > large class, so hopefully this year he will do better now that they are > doing some things differently for him.>> As you mention your children I am amazed at all the things they have, >

but a little fuzzy on what PDD-NOS means, never did learn the jargon > suppose I should.>> You say your husband is disabled, and you care for your father also. Do > you do all of this alone? I take care of my son with my husband, and it > takes two of us for all of his needs, even to walk him the short > distances to the bathroom, or to bed. Plus my husband has many health > issues, heart attack, heart surgery, knee replacement, needs another, > and spinal stenosis.>> I went to college in my 40s and 50s and earned two degrees from the > University of Oregon, a BS and an MS. It was a great time in my life!>> Right now I care for my son and am full time grandmother also to three > of my daughter's children. We do an awful lot together. I used to care > for them right after each was born, when my daughter worked, but she has > quit on disability

so I don't have to get them ready for school anymore > so that is good for me. But we still keep pretty busy. I also have four > other grandchildren, two are married and one has a baby, making me a > great grandmother now.>> Just write whenever you feel like it, I like to write to vent and share > when the mood hits me which is pretty much every day as I am at home a > lot with my son. I just wrote an article about Motherhood on my Facebook > page today. It is called; "Motherhood is like driving in the dark." I > like to inspire and encourage other mothers as I have been through a lot > and have a lot of experience.>> Well talk to you soon,> Carolyn Grandma in Springfield, Oregon U.S.A. ;o)>>> Mimi Fogarty wrote:> >> Hi, I just joined last night and thought I would introduce myself. I >> have 5 children, all on

the spectrum. My 23yr old daughter has PDD-NOS >> with bipolar and is not medicated by her choosing. My 21yr old >> daughter has Down Syndrome (cog age of 4-6), hydrocephalus, and >> PDD-NOS and acanthosis nigricans. My 15yr old daughter has mild >> cerebral palsy, Aspergeres Syndrome, bipolar disorder w/psychosis, >> anxiety disorder, panic disorder, and ADHD. My 10yr old son has >> PDD-NOS, borderline intellectual functioning (cog age of 5), apraxia >> of speech, a mood disorder and encopresis. My 9yr old son was born >> with Fetal Valproate Syndrome, suffered static encephalopathy from a >> traumatic bith, he's diagnosed with PDD-NOS, encopresis, and a mood >> disorder.>> I'm a stay at home mom and part time college student working on my >> Social Work degree. I'm married to my best friend Jon, who is 100% >> disabled

Desert Storm vet. I'm also caring for my 81yr old father who >> is dying from end stage cardiac disease and end stage renal failure.>> I'm happy to be here. :-)>> Mimi>>>> >>> ------------------------------------>>