Re: I can't wait for a diagnosis!! :(

[Guest guest]

What a story, Cari...all I can say is " amazing!! " My

hat is off to you...God bless your whole family!

Lynn

--- Cari Dorsey wrote:

> Ed,

> I knew on Christmas eve morning of '98 when

> was two. He woke up that

> morning and when I went to change his diaper, he

> wouldn't bend his legs for

> me. I guess my gut instinct kicked in in that

> single moment and life has

> truly never been the same. On Dec. 21st we had gone

> bowling and he had done

> everything himself. d the ball, etc. He got

> worse daily over that

> Christmas weekend. Mon. was the 28th and we took

> him in. Blood was drawn

> as the Dr. suspected Juvenile Rheumatoid Arthritis.

> On Wed, ( couldn't

> even bend down by this time) the results came back

> negative. On Thursday

> saw his regular Dr. who had been out of town.

> She was shocked to see

> how was acting and walking. She knew him

> well. She ordered an x-ray.

> The X-ray tech took me aside to whisper to me that

> the radiologist had

> already looked at the X-ray and hadn't seen a

> fracture. It was New Years

> Eve and she didn't want me to worry while waiting

> for 's Dr. to call me

> with the results. We had been praying for a

> fracture. I wanted to lay down

> and cry when she told me. She had thought that

> would be good news. A

> fracture I knew we could fix. 's Dr. consulted

> with a Juvenile

> Orthopedist who told her to run a CPK test on the

> blood that had been drawn

> the previous Monday. We didn't know what CPK was

> and we were told to wait

> by the phone for the results. We received a call at

> 7:16 New Years Eve from

> 's Dr. who told us that his CPK level was 3700

> and that was indicative

> of only one thing. She then told us that had

> Duchenne's Muscular

> Dystrophy. Duchenne's life expectancy is to around

> the age of 16. Luckily

> my parents had been staying with us over the

> holidays as the next 72 hours

> were the worst I've even had to live through. I

> remember throwing up,

> passing out, my mom carried a paper bag with us as I

> would start to

> hyperventilate at anytime. We had already decided

> to open our business in

> Augusta, GA. We were living in Charlotte, NC at the

> time became ill.

> Our office was to open Jan. 4th. The kids and I

> were going to move in the

> spring and Jeff was going to commute the 2 1/2 drive

> every weekend and then

> sell our house in the spring and move in the summer.

> The dx changed

> everything. We went to Augusta the next day and

> rented out a house, a ranch

> so wouldn't have stairs. My mother and I

> returned to Charlotte,

> rented out our house there and packed us up in 3

> weeks time. I remember

> everything and nothing from that time. It seemed

> like such a chore to even

> remember to breathe. was getting worse by the

> day so they decided to

> do a muscle biopsy to see why his MD was so

> aggressive. The biopsy was done

> on Jan. 22nd. We were not given any hope. They

> were very firm in their dx.

> On Jan. 26th the phone rang again and it was

> 's Dr. calling us to

> change his Dx to JDM. I had never heard of it but

> she told us that one of

> the best J. Rheumy's was in Augusta, GA where we

> were already moving and she

> had already made an appt. for 2/2. The rheumy

> hadn't wanted to

> start steroids yet but 's Dr. and the

> orthopedist decided the sooner

> the better and took his first done of steroids

> that night. We saw

> results 2 days later. On Jan. 30th turned 3.

> That was quite a party!

> So, for us, Dermatomyositis is a gift. I know that

> sounds odd and I would

> do anything if it was me and not who had it,

> but we are certainly

> counting our blessings. I have met many mothers who

> have sons with

> Duchenne's MD. is a junior goodwill

> ambassador for the MDA.

> Duchenne's is a devestating disease. I have spend a

> lot of time this week

> at MCG sitting with a dear friend who's 8 year old

> who has MD is fighting

> viral pneumonia. He is fighting for every breath.

> I wish for every family

> that they would get the phone call that we did. I

> am sorry I got long

> winded. It has been an amazing 3 years.

> Cari

>

>

> >

> >Reply-To: OurMyositis

> >To: OurMyositis

> >Subject: Re: I can't wait for a diagnosis!!

> >Date: Thu, 29 Nov 2001 04:13:37 -0000

> >

> >WOW! You must have been petrified before you found

> out what was

> >wrong with him. Poor guy. So glad he's doing much

> better now.

> >

> >Ed

> >

> >

> > > Ed,

> > > was virtually a rag doll when he started

> the Prednisone. He

> >could

> > > hardly lift his head. He was sleeping with me

> at night because he

> >couldn't

> > > roll over by himself or even pull his own

> blankets off and on.

> >Within 48

> > > hours of his first Pred. dose, he was able to

> slide off the couch

> >and stand

> > > on his feet. He would still be leaning on the

> couch but it was

> >amazing

> > > progress. It was a good 9 months for him to be

> able to get up and

> >down off

> > > of the floor without help. Every one is

> different. Prednison for

> >us was

> > > mostly a very positive experience.

> > > Cari

> > >

> > >

> > >

> > >

> > > >From: " Ed " <ed@r...>

> > > >Reply-To: OurMyositis@y...

> > > >To: OurMyositis@y...

> > > >Subject: I can't wait for a diagnosis!!

> > > >Date: Tue, 27 Nov 2001 02:21:21 -0000

> > > >

> > > >This waiting part is the pits! I did manage to

> get one of my docs

> >at

> > > >work to order an elec chair for me though so

> hopefully that will

> >help

> > > >in the mean time. If I do get put on

> prednisone how soon can I

> > > >expect results? Or is it to individual to ask?

> I don't even get

> > > >seen by the rheumy again until the 3rd so we

> can set up the leg

> > > >biopsy. WAAAAAAAAAAAAAAAAAAAAAAA!!!

> > > >

> > > >Ed

> > > >

> > > >*what a whiner eh?*

> > > >

> > >

> > >

> > >

>

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