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Old 01-25-2016, 04:50 AM #1
Neuroproblem Neuroproblem is offline
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Originally Posted by JoannaP79 View Post
Excuse all the posts, I'm very desperate today.
One of the extensive list of symptoms I have is a regular flare up in my lips. They go red, a bit swollen looking, burn like hell fire and feel prickly and flaky. Does this in any way point to a Sjogrens diagnosis? My rheum won't entertain it as my bloods came back negative for it and I have no dry eyes or mouth, just full body sfn. He won't do a lip biopsy even though I begged. He said it would be unethical with no other indicators. I kind of see his point but i have read SFN can precede all other sicca symptoms. I already have one autoimmune which affects the spine, I'm sure the DRG are being attacked. Am I right in thinking the DRG are throughout the spinal column?_
Im guessing the doctor, is trying to avoid malpratice, or violating protocol. even if you have a suspected autoimmune, in the states the doctors here in some insurances would allow such testing, especially if you have another autoimmune disease, autoimmune disease usually co-exist with other autoimmunes. When you say autoimmune attacking your spine, is it ankylosing spondylitis?

It is pretty hard to suggest if you dont have dry eyes or dry mouth,nose, joint issues. Although RA or ra-like diseases, and sfn can cause these symptoms as well.
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Old 01-26-2016, 03:08 PM #2
JoannaP79 JoannaP79 is offline
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JoannaP79 JoannaP79 is offline
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Originally Posted by Neuroproblem View Post
Im guessing the doctor, is trying to avoid malpratice, or violating protocol. even if you have a suspected autoimmune, in the states the doctors here in some insurances would allow such testing, especially if you have another autoimmune disease, autoimmune disease usually co-exist with other autoimmunes. When you say autoimmune attacking your spine, is it ankylosing spondylitis?

It is pretty hard to suggest if you dont have dry eyes or dry mouth,nose, joint issues. Although RA or ra-like diseases, and sfn can cause these symptoms as well.
Hi all, thank-you for all your helpful info. Elaine, that's great. I'm going to look on there. It would be helpful to compare notes with other Sjorgens people.
Neuro problem, yes I have ankylosing spondylitis and it is out of control at the moment. I know this must be controlled as is likely the fire fuelling the sfn. I have a real predicament with treatment options for the A.S. Long story. :-(
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Old 01-26-2016, 03:44 PM #3
JoannaP79 JoannaP79 is offline
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[QUOTE=JoannaP79;1195705]Hi all, thank-you for all your helpful info. Elaine, that's great. I'm going to look on there. It would be helpful to compare notes with other Sjorgens people.
Neuro problem, yes I have ankylosing spondylitis and it is out of control at the moment. I know this must be controlled as is likely the fire fuelling the sfn. I have a real predicament with treatment options for the A.S. Long story. :-(
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