Re: Not sure where to start ..

[Guest guest]

Welcome,

I don't know if by paralasis you mean not being able to move without

assistance but yes, I was that bad at onset. I couldn't lift my head from

the pillow or hold even a cup. My mother had to carry me. It was as if the

Still's attacked my muscles as well as my joints. And it did. I was later

told by my doctor that it could. I hope this helps.

You can ask questions any time and there is sure to be someone with

experiences that can relate and share.

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

From: chatchick76

My first question is about the complete the paralysis .. is this common

with SD? I also found that most cases of JRA are not recurring however this

is not the case with me.

Thanks for any help you can give =)

[Guest guest]

My daughter was 14 at onset and she, too, was unable to move. Many tears and

having to ask me to scratch her nose....She had a severe case of Systemic

Juvenile Idiopathic Arthritis. She has had frequent flares...her latest

including multiple secondary conditions. Systemic JIA sometimes does not recur;

however, Hadleigh was not so lucky!

Take good care...

Not sure where to start ..

When i was 11 approx 2 weeks after a bout of Scarlet fever I woke up unable to

move anything! I remember having to spend 2 weeks in the hospital and wasnt

released until i was able to walk again, raise my arms above my head, squeeze

things with my hands rotate my head etc. I was diagnosed with JRA

[Guest guest]

This is also what I experienced at onset.I remember the nurse telling visitors

not to touch anything except my hands,which I also couldn't move,but had no pain

in unlike the rest of my body!Elly

________________________________

To: Stillsdisease

Sent: Sunday, December 4, 2011 2:35 AM

Subject: Re: Not sure where to start ..

 

My daughter was 14 at onset and she, too, was unable to move. Many tears and

having to ask me to scratch her nose....She had a severe case of Systemic

Juvenile Idiopathic Arthritis. She has had frequent flares...her latest

including multiple secondary conditions. Systemic JIA sometimes does not recur;

however, Hadleigh was not so lucky!

Take good care...

Not sure where to start ..

When i was 11 approx 2 weeks after a bout of Scarlet fever I woke up unable to

move anything! I remember having to spend 2 weeks in the hospital and wasnt

released until i was able to walk again, raise my arms above my head, squeeze

things with my hands rotate my head etc. I was diagnosed with JRA

[Guest guest]

Hi CC;

I have had SD now for over 4 years and I'm male 58. I had a very bad case of

Stills for the first 2 years and did get better with med's.

The first year in the early stages, after a couple hospital visits, I would lose

the use of my left arm or leg. I could not move my arm and it did have

feeling.The same with my leg, and this was only on the left side of my body.  I

was on Presidone 80mg and it could have been the med's or just a symptom . The

doctors did not know . I tapered the Presidone  down for another year ,and

this lose of use was in my early stages and it lasted for about 6 months and has

not ever happened sence. Hope that helped....

 

>________________________________

>

>To: Stillsdisease

>Sent: Saturday, December 3, 2011 10:49 PM

>Subject: Not sure where to start ..

>

>

> 

>When i was 11 approx 2 weeks after a bout of Scarlet fever I woke up unable to

move anything! I remember having to spend 2 weeks in the hospital and wasnt

released until i was able to walk again, raise my arms above my head, squeeze

things with my hands rotate my head etc. I was diagnosed with JRA at that time.

I remember having to take 8 asprin a day, take my temperature every 6 hrs, have

blood drawn every 2 weeks and see the eye doctor once a month. Upon a recent

hospital visit for an unrelated event while giving my history to the ER doctor

he asked what type of JRA i had ... well I was stumped on this and he advised i

should try to research this and see if my medical records are still available as

i may need this information (i cant find them) My first question is about the

complete the paralysis .. is this common with SD? I also found that most cases

of JRA are not recurring however this is not the case with me.

>

>Thanks for any help you can give =)

>

>

>

>

>

[Guest guest]

Just an idea ( boy I am full of them today) When I was diagnosed with

Stills 5 years ago one of the things that got my Dr attention was that I

had had rheumatic fever twice. I now thinks I never had this that it was

misdiagnosed and I have had this disease all along. The first one was

when I was in grade school. Rheumatic fever and Scarlet fever on on the

same lines and I do believe when you have Stills at a young age it s

called jra. I may be wrong about this. not sure. I have never had

paralysis though so I dont know about this. Just something to look into.

Val

________________________________

From: Stillsdisease

[mailto:Stillsdisease ] On Behalf Of chatchick76

Sent: Sunday, December 04, 2011 12:49 AM

To: Stillsdisease

Subject: Not sure where to start ..

When i was 11 approx 2 weeks after a bout of Scarlet fever I woke up

unable to move anything!

Moderated

RH