Re: Hi! New and grateful for this site

[Guest guest]

well alot that time was spentplaying crib lol.

are you any good? I used to play on yahoo and I was in the top 100 most of the time when I actually played regularly - love that game but for some reason can't beat my husband - think I feel sorry for him.....

[Guest guest]

Welcome Vicky acually 13 months to get a diagnosis is not too bad,i know it

probally seemed like an eternity huh.Im 32 diagnosed in 2002,my

diagnosis was a quik one about 3 months,a month of that in hospital.Keep

your chin up it can get better,i had 2 Flares also after feeling better,its

been about 9 months now i have been feeling pretty great almost

normal,whatever that is .Embarassing to admit but i worked close to 60

hours in 4 days this week cement finishing,well alot that time was spent

playing crib lol.Right now im on low dose pred still 4 mgs and 15 mgs

Methotextrate.Take care. d.Canada

Hi! New and grateful for this site

>

>

> Hi, my name is Vicki. I was diagnosed with aosd in may 2004. It

> took 13 months of different doctors, tons of xrays, blood work, doc

> visits, ct scans, bone scan, echocardigram, mri. Finally they sent

> me to a rheumy where after looking at my chart and the last mri, she

> diagnosed me within 1 week. I was so relieved at that point,

> knowing that they had found what I had and they were going to

> prescribe medicine to help, I almost didn't care what they called

> it. Atleast " it " was going to get better. I was at the point of

> seeing a therapist for depression bc I didn't think they were ever

> going to find out what it was, and I thought of living with the

> daily fever of 102, the fatigue, joint pain, everything else that I

> could think I could take it. Well, the dr put me on plaquenil 400

> mg and prednisone 10mg. After 2 weeks of being sick from the meds,

> I patiently waited. After 1 month or so after being on the meds, I

> started to feel human again. After 2 months, I couldn't believe

> most of my pain was down to aches, I could get out of bed in the am

> without bending over like a old lady. My fever ( after over 1 year

> of an evening temp 0f 102, was gone. I was so grateful. Then I

> started thinking of what I had. There was almost no information

> given to me on stills. I was so busy thinking of the immediate

> great feeling that I was not seeing the whole pic. The info I found

> was scary, but helpful too. I started thinking that I was feeling

> so good, that I couldn't have stills and maybe she missed diagnosed

> me. Well, that didn't last too long. Over the next month or two

> came the sore throat,fever, a rash that I never had before in my

> life, then one day I could barely get out of bed, and more. After

> recovering from that... I woke up and started to learn about my

> illness and decided that information and how to live with it would

> be the best thing. That is why I am here now. I have learned a lot

> from " lurking " and be able to relate has been a comfort to me. Even

> though I am new, I hope to be able to help others, or offer support

> to anyone who needs it. Sorry this is so long, but I couldn't stop

> writing. I guess it needed to come out. thanks - Vicki

>

>

>

>

>

>

> 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]

Hi Vicki,

Nice to meet you. So glad you found this group. I too am new here. After seeing many arthritis doctors and each one calling it something different. Trying so many meds and being on preds for so long I thought I needed a group too. Here I am.

I know all too well the sore throat and fever but I also get headaches do you? The doctor asked me if I had a rash and I said no, but he found it on my chest.

Anyway, so good to have you here. This I have found is a wonderful bunch of people who are so nice and willing to help.

Hugs; Gingerpvperri2000 wrote:

Hi, my name is Vicki. I was diagnosed with aosd in may 2004. It took 13 months of different doctors, tons of xrays, blood work, doc visits, ct scans, bone scan, echocardigram, mri. Finally they sent me to a rheumy where after looking at my chart and the last mri, she diagnosed me within 1 week. I was so relieved at that point, knowing that they had found what I had and they were going to prescribe medicine to help, I almost didn't care what they called it. Atleast "it" was going to get better. I was at the point of seeing a therapist for depression bc I didn't think they were ever going to find out what it was, and I thought of living with the daily fever of 102, the fatigue, joint pain, everything else that I could think I could take it. Well, the dr put me on plaquenil 400 mg and

prednisone 10mg. After 2 weeks of being sick from the meds, I patiently waited. After 1 month or so after being on the meds, I started to feel human again. After 2 months, I couldn't believe most of my pain was down to aches, I could get out of bed in the am without bending over like a old lady. My fever ( after over 1 year of an evening temp 0f 102, was gone. I was so grateful. Then I started thinking of what I had. There was almost no information given to me on stills. I was so busy thinking of the immediate great feeling that I was not seeing the whole pic. The info I found was scary, but helpful too. I started thinking that I was feeling so good, that I couldn't have stills and maybe she missed diagnosed me. Well, that didn't last too long. Over the next month or two came the sore throat,fever, a rash that I never had before in my life, then one day I could

barely get out of bed, and more. After recovering from that... I woke up and started to learn about my illness and decided that information and how to live with it would be the best thing. That is why I am here now. I have learned a lot from "lurking" and be able to relate has been a comfort to me. Even though I am new, I hope to be able to help others, or offer support to anyone who needs it. Sorry this is so long, but I couldn't stop writing. I guess it needed to come out. thanks - VickiVisit 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]

Vicki, Welcome to the group! I was diagnosed just this past Sept.,

and like you I was real overwhilmed with the info I read. Unlike

you, I was diagnosed just 4 weeks after my original flare, in that

way I am real gratefull! I couldn't imagine fighting this for any

longer then the 4 weeks, without a diagnosis. Even in that 4 weeks,

I really needed to know what it was that I had, and it was real

frustrating not knowing! I can not imagine having the temp. spikes

every night for over a year! Welcome to the island! Now that

you're here, get active!

Rob

[Guest guest]

Dear Ginger,

Thanks for the warm welcome. You asked me about if I got

headaches, and boy yes I do. They were almost daily, usually in the

afternoon or evening. They could have been bc of my fever every

evening. Talk about getting cranky fast....I am surprised my family

didn't disown me LOL... I still get them occasionally. For the

last two weeks, I have been getting headaches, and some of the joint

pain has been coming back. Its not too bad, luckily my appointment

with the rhuemy is in two days. I don't know if I will have to stop

decreasing my pred and go back up or if the plaquenil will have to

be changed. who knows? Anyway, thanks again and I hope you have

a good day. Vicki

In Stillsdisease , Ginger Sunshine <pct777@y...>

wrote:

> Hi Vicki,

>

> Nice to meet you. So glad you found this group. I too am new here.

After seeing many arthritis doctors and each one calling it

something different. Trying so many meds and being on preds for so

long I thought I needed a group too. Here I am.

>

> I know all too well the sore throat and fever but I also get

headaches do you? The doctor asked me if I had a rash and I said no,

but he found it on my chest.

>

> Anyway, so good to have you here. This I have found is a wonderful

bunch of people who are so nice and willing to help.

>

> Hugs; Ginger

>

> pvperri2000 <pvperri@o...> wrote:

>

> Hi, my name is Vicki. I was diagnosed with aosd in may 2004. It

> took 13 months of different doctors, tons of xrays, blood work,

doc

> visits, ct scans, bone scan, echocardigram, mri. Finally they

sent

> me to a rheumy where after looking at my chart and the last mri,

she

> diagnosed me within 1 week. I was so relieved at that point,

> knowing that they had found what I had and they were going to

> prescribe medicine to help, I almost didn't care what they called

> it. Atleast " it " was going to get better. I was at the point of

> seeing a therapist for depression bc I didn't think they were ever

> going to find out what it was, and I thought of living with the

> daily fever of 102, the fatigue, joint pain, everything else that

I

> could think I could take it. Well, the dr put me on plaquenil

400

> mg and prednisone 10mg. After 2 weeks of being sick from the

meds,

> I patiently waited. After 1 month or so after being on the meds,

I

> started to feel human again. After 2 months, I couldn't believe

> most of my pain was down to aches, I could get out of bed in the

am

> without bending over like a old lady. My fever ( after over 1

year

> of an evening temp 0f 102, was gone. I was so grateful. Then I

> started thinking of what I had. There was almost no information

> given to me on stills. I was so busy thinking of the immediate

> great feeling that I was not seeing the whole pic. The info I

found

> was scary, but helpful too. I started thinking that I was feeling

> so good, that I couldn't have stills and maybe she missed

diagnosed

> me. Well, that didn't last too long. Over the next month or two

> came the sore throat,fever, a rash that I never had before in my

> life, then one day I could barely get out of bed, and more. After

> recovering from that... I woke up and started to learn about my

> illness and decided that information and how to live with it would

> be the best thing. That is why I am here now. I have learned a

lot

> from " lurking " and be able to relate has been a comfort to me.

Even

> though I am new, I hope to be able to help others, or offer

support

> to anyone who needs it. Sorry this is so long, but I couldn't

stop

> writing. I guess it needed to come out. thanks - Vicki

>

>

>

>

>

> 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.

>

>

>

>

>