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05/13/2010 02:28 PM

RSD Stage 2

Posts: 15

Today, I had to go to the doctor to fit me

in a brace for my foot and leg, Aparantly,

the RSD has moved into stage 2..

The X-ray is showing narrowing and deterating

of my bone! so, they are putting me into a brace

and shoes. This to also help protect my foot

and leg! June 1st, I am go to pick them up.

I will keep yal posted, ty, GBU..

Mommaeagle, Susie: Sad [file]


05/21/2011 02:18 AM
Posts: 15

Well, Folks, I've been having pain in my bones

now, and it's also back in my right hand, the

burning is bad! I've been refered back to my

old doctor in Anchorage, I've seen her before,

so maybe she can help me!

It's only a two day visit, and a confrence visit

only, I'm requesting that she does a study to

determine the progression in the RSD. I'm

requesting a another series of X-Rays be

done and a thermonal test too, I'm tired of

this being a mystery, in knowing what's

happening with my bones now! I'll keep yall

posted, Leaving this Sunday, I also am going

to visit an old friend while I'm there too!

The last time in Jan of 09, I was scheduled to

go back to Anchorage to a Specialist to discuss

the next treatment measures, my husband had

his Major Stroke and I couldn't make it to my

appointment, so this is the missed appointment

I had.

TAKE CARE, Susie Smith.. AlaskaSmile Ermm Ermm Ermm Ermm

05/28/2011 02:12 AM
Posts: 15

Update: May27,2011

I went to Anchorage last week for my

appointment, The doctor has ordered

a another Triple Phase Bone Scan, and

and she has also prescribed me a leg

brace with bars on both sides of the

left leg.

I will be returning to Anchorage to pick

up the brace and then wearing them for

a week or two to see how it does.

Then I return again a few weeks later to

Anchorage for another dr Appt, to discuss

the results of the test.

She has increased my medication of Lyrica

to help me with the bone pain, I've been


I will keep you posted on the progress

of this all, Thank you to all who really

care about me. I was so glad that surgery

is not now!

Smile Smile

05/28/2011 02:01 PM
Posts: 2032
VIP Member

Mommaesgle, you are in my prayers. RSD/CRPS can and after a few years often does show loss of bone especially from the RSD affected site(s). I hope that the brace does not cause you to much pain (because of the RSD/CRPS) that it is hard or impossible to wear.

Some experts in the disease (there really aren't many true experts, wish there were) don't believe there are stages, that the disease may progress and wane, that it may jump through the variety of symptoms, or go to the level of distruction of the immune system (a symptom of what has been labeled stage 4) almost from the start of symptoms, or never go beyond the beginning symptoms. The disease (first called causalgia in the Civil War) has always been thought by the few doctors who knew about it as having stages and going from stage 1 to stage 4 through it's course with each patient but now some researchers and doctors who study it are saying different. Most doctors including many pain docs (who know something more about our shared monster disease or should know about it) still refer to the stages and tell us what stage we are and often scare us by labeling us "old timers" (having the disease for a long time) as stage 4. Even sometimes they tell the folks who have had the disease for only a few years they are stage 4. In stage 4 the symptoms are scary. Please do not think I am saying your doctor does not know about the disease or that I am trying to criticise her. Just that there is a controvesy about about whether RSD/CRPS has stages.

I too have for some years lost bone, have had the monster for 11+ years. So I take the once a year infusion (I have GERD and the oral meds leave my heartburn untreatable and unbearable. I figure one infusion a year is better for me than one a month or more often and I give myself enough shots daily for diabetes so don't want to do more of that form of treatment for osteoporosis). I hope you and your doc find a good way of treating your osteoporosis. I know it must be very hard having to travel so far for treatment.

Welcome to the group. Sending hugs



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