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Old 10-09-2015, 05:31 PM
Theodora Theodora is offline
Junior Member
 
Join Date: Apr 2015
Location: Madison, WI
Posts: 22
10 yr Member
Theodora Theodora is offline
Junior Member
 
Join Date: Apr 2015
Location: Madison, WI
Posts: 22
10 yr Member
Default Bones Being "Eaten"

Yikes. I had a horrible appointment last week. I have been having joint pains so naturally went to see a rheumatologist. This Rheumatologist said right away in my appointment that I did not have RSD or Severe Small Nerve Fiber Neuropathy. Sorry Mr. Ego Man, past testing has verified both of these. He also said I do not have arthritis, Rheumatoid or otherwise.

I pointed him in the right direction of the records in my chart proving both of these and he agreed with me and then said I had a really bad case of RSD. (thanks). I'm not currently flared up so he was sort of rude about it in general. Okay, I wasn't flared that day, I am this week. So he pulled up a bone scan from 2008 and said "Well, there's your problem, your RSD is "eating" your bones". Right, that's not exactly accurate or relevant to what is going on now.

So I have a question after all of this. I had that bone scan done when I was significantly flared up. Does disease progression cause additional bone "wasting" and would a follow up scan be the right route to go? Obviously I need to find someone other than this guy to order it and no one currently follows my RSD or SSNFN.

I left with the diagnosis of "Diffuse Pain Syndrome caused by SSNFN and RSD" - I can't even tell what that is. Diffuse Pain Syndrome looks like Fibromyalgia. Is that what he is saying? If so, it's not accurate.

Do any of you have joint pain? Is it RSD? Is it something else? Mine is in my hips the worst, then my fingers, shoulders and metatarsal bones (in order of severity). What do you do for it? Is it something physically deteriorating or false pain signals? I'm so confused and angry at the dismal help.
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Age 32 - RSD/CRPS Dx 11/2006 with Severe Small Nerve Fiber Neuropathy and various recurrent issues and autoimmune disease.
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Enna70 (10-10-2015), mama mac (10-10-2015), RSD ME (10-10-2015)