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Old 04-20-2015, 05:27 PM #17
JoannaP79 JoannaP79 is offline
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Join Date: Feb 2015
Location: South England
Posts: 246
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JoannaP79 JoannaP79 is offline
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Join Date: Feb 2015
Location: South England
Posts: 246
10 yr Member
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Quote:
Originally Posted by Billylyne5 View Post
I have had blood tests for pretty much anything they can think of all negative except

Low white count all the time

Equivocal DSDNA but no plan to repeat this.

Neg ANA
Neg CRP
Neg ESR
Neg RA
Neg anti RO and LA
Plus lots of others
No diabetes and low risk of it too
I do have textbook sjogrens symptoms 😑
Hi Billylyne, sorry you are dealing with the *** healthcare system. I have confirmed Ankylosing Spondylitis (AS) which is autoimmune and SFN confirmed. My bloods just came back clear clear clear yet I am in the worst AS pain at the moment. It just doesn't tell the whole story. I am only diagnosed with AS due to specific MRI tests of certain areas implicated in AS and the fact I have a particular HLA gene and sometimes get eye problems linked to AS. My bloods therefore tell nothing at all of my current autoimmune status. We are still so behind on understanding and measuring autoimmunity. My neurologist is also trying to wash his hands it seems and defer to the rheumatologist. The rheumatologist is trying to offer something by way of treatment for AS and some hope it may help SFN. But the treatment he offers can itself cause neuropathy. Argh. At least he is trying though. Did anyone you have seen suggest trialling Plaquenil for Sjorgens? Or did they want more definitive evidence? I don't know if Plaquenil can help with SFN from Sjorgens or stop the attack and therefore progression. Others may chime in with better knowledge of Plaquenil than I.
Ref the shoes, I understand that. All I ever wear, ever, are one pair of trainers and a selection of 2 pairs of tracksuit bottoms. I am 35 and don't see that ever changing until the day there is a neuropathy cure. I'm off sick and have been for two months so have same worries ref work and the future.
I don't know if you could try get second opinion? I'm hopeful its our right to at least access that on NHS??
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Billylyne5 (04-21-2015)
 


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