Re: (unknown)

May 27, 2003

Hi ,

I have had worlds of experience tapering pred (2 1/2 years worth). The one thing that I found through it all was that at about day 3-5 of a drop, she started hurting, and had to work through about 4 days of intense pain. This happened with every drop, but take heart, because Abbie has been off prednisone almost a year.

Christy (Abbie, 13 systemic)

May 29, 2003

Congrats, dear Tess, on your loss of inches. You're an inspiration to me.

Don't be discouraged by the loss of inches and not weight, because building

muscle will increase your metabolism and the weight will follow.

Love you bunches!!!

(VERY homesick) Carol

[ ] (unknown)

Hi...Saw my PCP today...I've lost 5 more inches, but no more weight.

She says not to be discouraged as I am building muscle. I DO need to

get some of this fat off...she says I have as evidenced by the

consistant loss of inches and keeping up and adding on to my exercise

routine.

She will check the anemia at my next. appt...if it is better that's

good, if it isn't, she wants me to have an endoscopy to look for some

kind of bleeding gastritis. Please Lord, let me be ok. I am really

tired.

She and I think I have started having hot flashes...I get these " hot "

attacks...blood glucose is good, no fever at those times. She said to

try a little Black Cohosh. I think it's interesting that I may be

having signs of menopause just prior to my hysterectomy.

Love to All...

Tess

May 29, 2003

This is fantastic Tess! I know you are anxiously waiting for the weight to

go, but have patience my friend. Keep getting stronger and you'll soon be

able to have more stamina and maybe then the weight will start to drop.

Our Health Co-Op has a menopause formula that has black cohosh in it. I

took it for awhile when I first started with the hot flashes. I don't need

it anymore, lucky me. I'd be glad to send you what I have left so you can

try it before you buy it. I have a half of a bottle left that is still

good. Here's what's in it:

http://www.ourhealthcoop.com/ourhealth_me.htm

a

> Hi...Saw my PCP today...I've lost 5 more inches, but no more weight.

> She says not to be discouraged as I am building muscle. I DO need to

> get some of this fat off...she says I have as evidenced by the

> consistant loss of inches and keeping up and adding on to my exercise

> routine.

>

> She will check the anemia at my next. appt...if it is better that's

> good, if it isn't, she wants me to have an endoscopy to look for some

> kind of bleeding gastritis. Please Lord, let me be ok. I am really

> tired.

>

> She and I think I have started having hot flashes...I get these " hot "

> attacks...blood glucose is good, no fever at those times. She said to

> try a little Black Cohosh. I think it's interesting that I may be

> having signs of menopause just prior to my hysterectomy.

>

> Love to All...

>

> Tess

May 31, 2003

In a message dated 5/31/2003 9:17:10 PM Central Standard Time,

kaclight@... writes:

> I let her compete when I knew she wasn't well enough (even though she said

> she was). She fell and got injured. I am having a hard time letting go of

> my lapse in judgement.

Kim, I think you did the right thing. As I was reading your post and you were

saying she got sick and everything, I thought, " Oh no, she didn't let her go,

what a disappointment. " Not that that would be the wrong thing to do, but

that it would be a bummer to miss such an exciting event if there was a chance

to

go.

I think you did the right thing by going by what she said and letting her

make the call on whether she was well enough or not. Falls happen, and she could

very well have fallen at 100% health. After 's isolation was let-up at

2-1/2 years of age, she had already missed so much. I made a pact with myself

that we would try to live life to the fullest whenever possible. Her grandma

cringes because I let her climb high on the playground and do adventurous

things.

But to me, those are her opportunities to let it all hang out and have fun

and be free (I spot her and don't let her do things that are blatantly unsafe,

don't get me wrong). If she breaks an arm it will certainly stink, but not as

much as sitting on the sidelines all the time and missing everything. So you

can certainly be safe by never taking a chance, but what fun is that?

I love those rah rah quotes like " Nothing ventured, nothing gained. " So for

letting her do something you weren't sure about, I say great job. No Guts, No

Glory!!!! Hee hee hee

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4, dairy

intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

June 4, 2003

Connie

Wow...thanx for the info. I was going to call you,but nighty nites. You have a

full day ahead of you tomorrow.

(unknown)

, my doc is a DO....

Doctor of Osteopathic Medicine:

I am typing this from an info sheet my doc had printed up on some info papers

in her waiting room, she prints up different things and this is on her new

patient info about her sheet. What the nurse said is that having a DO is more to

your benefit than a regular MD, I agree.. read on

Osteopathic physicians understand how all the body's systems are

interconnected and how each one affects the others. D.O.'s receive extra

training in the musculoskeletal system (your body's interconnected system of

nerves, muscles and bones that make up 2/3rds of your body mass). Osteopathic

training provides them with a better understanding of the ways injury or illness

affects ALL of your body systems.

Doctors of Osteopathic Medicine graduate from an accredited training

institution. Typically medical school requires 4 years of teaching and training.

Then they typically train for 3-6 years (depending on their specialty) fine

tuning and building on their medical school education.

D.O.'s take licensing exams and must pass a state medical board exam to be

legally allowed to practice medicine. D.O.'s practice in all medical specialties

including psychiatry, OB/GYN, orthopedics, surgery and of course family

practice.

So, with them studying more than an MD, esp more training of the muscles,

nerves and bones, they just have more experience and training. As I've said

before, I love my doc and wouldnt train her for the world.

Saw doc today, shocking it was SO fast but I have an MRI of my neck tomorrow,

xrays of my pelvic area/low back, etc (tilted pelvis, other reasons besides the

as-you-know low back problems that I have). Then after all that I get to go to

water therapy. EMG shows very slight damage but nothing serious, amazing they

both say considering my sciatic nerve has been pressed on for just over 3 years

now. Doc is still pressing on tho, she wants answers as much as me. She also

upped my pain meds. I also talked to her about a chiropractor, and tho I don't

care for them she knows I'll try anything once just to say ok it works or ok it

didnt do anything, if you dont try it may be the one thing that helps. She

specified she wants me to go thru more massage than manipulation, I know the guy

I'm going to go see also so will see what happens and if it's something for me,

tho the first visit is hard to decide that, like I said will see how it goes. I

just know they are trained in massage and am thrilled I get one w/o paying

$50/hr or more (cheapest I've found here, no way I can afford that!).

That's all folks, I gotta lay down

Connie

--

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June 6, 2003

Oh, crud! That's awful news, .

Well, at least I have the x-rays Dr. Bigshot made a couple of years ago, as

well as the letter from Dr. LaGrone confirming the sagittal imbalance

diagnosis and discussing possible surgical treatment (without going as far

as to say I need surgery.)

Well, maybe I didn't misread his web site and the Dr. Bigshot hoop was a

required barrier to the illustrious demigod Rand. Of course you need a

qualified revision surgeon's opinion as to whether you need revision

surgery. Sheesh.

So I guess the message here is that the only person in New England who is

really qualified to give us advice on how to manage our flatback (Bigshot

sure as hell isn't!) doesn't want to see our pretty faces unless we're

ready to be cut into. It's enough to make me run out and buy a ticket to

Texas.

Sharon in southern New Hampshire :^)

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 fusion T5 to L4 w/ single Harrington rod

Flatback, congenital thoracolumbar kyphosis, L5-S1 degeneration, etc.

At 01:50 PM 6/4/03 -0000, you wrote:

> Hi All - Well today I got up enough courage to call Dr. Rand's office

> to make an appointment. That concept was squashed in a second flat! The

receptionist informed me that unless I need surgery, he wouldn't

be willing to see me. So, I then posed the question, " Well, if he

won't see me, how would I know if I need surgery or not? " . She

replied that it would be best if I had my own regular primary

physician take some xrays and then call her back so that I could

arrange to hae them sent for him to review, THEN if he felt I would

be a surgical candidate, he would advise me. So......I guess I am

calling my local, small time orthopedic after all! Hmm...how was it

that I just knew things would not go smoothly, right from the get-

go???

June 8, 2003

Hi Kristy,

I was wondering how you went about finding a geneticist and do they have

different specialities? Did they try to determine what type of BPEI you had

by blood tests only? I am really interested in having myself and my son,

Dylan, tested. I was a new mutation, also. Were they able to give you any

other information when you had the testing done? I would like to know if I

have an early menopause in my future because we would like one more child

and it took so long for me to conceive Dylan.

Have you set a date for your wedding? I am excited for you, I hope all goes

well.

Thanks for your help,

>From: " kirstymcconaghy25 " <kirstymcconaghy25@...>

>Reply-blepharophimosis

>blepharophimosis

>Subject: blepharophimosis (unknown)

>Date: Sun, 08 Jun 2003 00:06:16 -0000

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> > Hi There,

>

>THanks for your message. I am fairly familiar with the BPEI 1 and

>11 theories. My problem is i have been to a geneticist to determine

>which one i am and they were unable to establish. Due to my being a

>new mutation and my periods being completely normal. THey said its

>possible i may have menopause/ovarian astrophe etc in the next few

>years, supposedly, there is no way to determine this based on

>tests. Dr Kent and the belgium researchers seem to dispute this

>point though.

>

>Thanks so much!, i would love to receive any article/s you have.

>

>take care

>

>Kirsty

>

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June 9, 2003

Hi , and welcome home.. I am glad that you have found the site, it is

wonderful here. I was diagnosed in October.. I was dealing with this for 2yrs

prior to that.. I am glad that they have finally diagnosed you and things

will get a little better now.. you have found a great place for comfort and

support..

Kelley in Colorado

Kelleyak31@...

June 9, 2003

Hi ,

My name is Carmen.....I'm in Michigan now. I'm almost 62.

Welcome to our island. We call it the Stilligan's Island. This actually is

a Paradise Island as we are so knowledgeable about this disease now and can

throw some good information and thoughts your way. You'll learn so much just by

reading our posts and asking your own questions. We all try to help one

another and rejoice when one of us gets better and better and we all hope for a

remission. They are there to be had but are few and far between. Hopefully now

with your diagnosis, your Rheumatologist will be able to start using some of

the newer drugs. I take Enbrel and MTX and find that combination works well

for me. Others take Remicade and Kineret and Humira and have had luck with

those. They are the newer drugs and maybe your doctor is not familiar with them

but talk to him about them and see what he has to say. Prednisone has always

been my drug of choice but it's so bad for our bodies that I have almost

weaned off of it now. What are you taking?

Very glad to meet you and will look for your posts now.

Good luck with your appointment.

xxoo

Mi. Carmen

June 9, 2003

Hi again, ,

I forgot to mention to be sure and ask for some brochures from Bob. He has

done a terrific job putting such important information and facts in them and

they will explain a lot to family and friends and your doctor.

Bob and Carole are going on a little trip until the middle of next month but

I'm sure they will send some to you when they return. They are wonderful

people and are always trying their best to keep us informed about our little

group........AND.....keep us in line. We tend to get a bit goofy at times...

)

Welcome, once more.

xxoo

Mi. Carmen

June 9, 2003

Hi :

My name is Bob and my wife and I are the Secty/Treas of the

International Stills Disease Foundation Inc. A big name for our small group

of about 600 people, huh? I hate to welcome you to the group but this is the

best place you can be if you have stills and I guarantee everyone here will

help you any way they can. I have a brochure on Stills Disease that I would

like to send to you so that you can give them to your Family, Friends and

yes to your DOCTORS! It seems that there are not to many Doctors that are

familiar with the Stills disease and most of them are most willing to learn

about it (but there are others). Our web site contains the most

comprehensive information that can be found almost anywhere and I am pretty

sure it is the best on the Internet! My wife Carole and I have adopted every

stills patient as one of our own children regardless of age so welcome to

the family also! The only limits we place on our children is that they try

to get better, try to help each other, don't ask for an allowance and don't

ask for loans, lol! Other than that everything is go! If you would like some

of the Brochures please send your full name, snail mail address including

zip code to my personal e-mail address which is oldgoat378@... .

Take care now and be PAIN FREE!

WE WILL WIN

Love Y'all

Bob & Carole

Mom & Dad

Panama City, FL

Please visit the Stills Disease Web Site at: www.stillsdisease.org

Politicians are like Diapers... They should be changed often and for the same

reasons!

June 9, 2003

Carmen....Thanks for the welcome. So far everyone has been terrific. I will be

asking for some of the brochures. My family is not quite able to grasp the

situation yet...but I have a great family and they have been so god to me since

I got sick. I have not worked since Nov. so things have been very stressful.

Hope is on the horizon with social security kicking in...YEAH!! That and a final

diagnosis have taken a lot of weight from my shoulders. Currently, my dr. has me

on naproxen but will probably start me on steroids and other new RA meds

tomorrow. Since I also have OA in both knees and will likely be having knee

replacement some day soon, I will be be starting rehab next week. The multitude

of drs. decided I need to be on a high protein diet and low carbs. So I have a

lot of things we are gonna try in conjunction with meds.

pscarmen@... wrote:Hi ,