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Old 12-21-2009, 02:48 PM
keep smilin keep smilin is offline
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Join Date: Aug 2009
Posts: 851
15 yr Member
keep smilin keep smilin is offline
Member
 
Join Date: Aug 2009
Posts: 851
15 yr Member
Cool Hi Rae...

Quote:
Originally Posted by Rrae View Post
Hi ....
I feel as tho i have no right to be here. I was tremendously humbled when i saw the photos in the 'stickies' thread......
My heart truly goes out....

I've been in the peripheral neuropathy section most of the time since i became a member, but to this day i'm not 100% sure that's what i have.
In 2 wks i will be getting a SCS trial implant after 5 yrs of searching for answers, seeing several specialists, hundreds of blood tests, not responding to any of the standard neuropathy meds, herbal cocktails galore, and umteen other procedures.....i honestly feel as tho every possibility has been ruled out and yet still i have no 'legitimate' diagnosis.
To be honest at this point i don't CARE what the diagnosis is, i just want the pain GONE.
It started out as knee pain (both knees), but has spread to the entire legs. The pain is piercing at the knees radiating outward as a severe 'burning' sensation. Each leg feels as tho it weighs 200 lbs in full flare mode. I can't hardly go up stairs anymore and getting harder and harder to even walk.
My legs LOOK normal tho. The RSD patient's photos CLEARLY shows a painful problem.
I've been told i have small fiber peripheral neuropathy/RSD/fibromyalgia/Hypothyroid/CRPS...... quite a mix of confusion is my point..
Getting the SCS seems to be the only thing left that has potential to cover the pain.....
Does anyone here have any input to share? All i get from the medical community is fragmented information. I have found that the REAL information is with the actual patients.
RSD patients seem to get the SCS implants moreso than neuropathy pts from what i hear anyway.

Thank you and God Bless
Rae
Nice to hear from you... Iam an RSD patient for 3 yrs... Rt. leg and spreading!! I have a SCS.. it was implanted in 9/08. Now everyone iis different but mine did not to prove to be a positive..as my trial was but the permenant one has mad my RSD mad!! I honestly don't use..I just have it in me... for good.... Btw reading your note.. seems you do have RSD going on....
Soft hugs!!
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"Thanks for this!" says:
AintSoBad (12-21-2009), Rrae (12-21-2009)