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??

Billylyne,
Just thought of a great way to save the NHS millions - get rid of all the arrogant, uncaring or downright bad Neuros.

I feel for you.

Dave.

Just a FYI English Dave there are many in the U.S. that point to the NHS as an exemplary health care system vs the largely private system here. I guess both have their benefits.

UTGrad,

I wholeheartedly agree with them. The NHS is one of the best things about our Country. Unfortunately, like all large Institutions, there is bad management, waste and Govt interference.

I will usually hear nothing against the NHS in principle, and the staff as a whole from Nurses through GPs and Doctors in the various Clinics to the Surgeons and Consultants. However, from years of personal experience and hearing from others first hand and here, there seems to be an inbuilt problem with Neuros in the NHS. Perhaps it is due, in part, to their never staying in a Post long enough to build up a rapport with their patients.

Dave.

I challenged the rheumatologist about her attitude of denying I have sjogrens because of negative bloods as even the NHS website says that 40% of people with sjogrens have normal bloods, but she said no she would never say I had it without positive bloods so she won't treat me at all,she offered nothing, even my ophthalmologist said you don't need positive bloods to have sjogrens, but she said she can't diagnose it, but she said the treatment for my eyes
She agreed I have lots of sjogrens symptoms though lol

i think i would get a second opinion from another rheumatologist from what you are saying. As far as being discharged by neuro and rheumatologist, that is pretty cold the way they handled it. There are ways to handle things and that wasnt it. The total lack of any human empathy is astounding in these stories we read about here.

If you dont want to find another rheumatologist right now, make a calender mark for yourself to have the GP repeat the blood tests in 6 months or a year or sooner if you get worse. if the results are positive you can get a rheumatologist then. of course this assumes the GP will do it and also takes care of whatever else you need medication wise resulting from your symptoms.

I can't believe it. I have just read 4 books written by rheumatologists and she is so wrong. How can she make that statement? I'm really mad about it. Can you go for a second opinion?

*admin edit*

II have to say this: Overall one great doctor saved my life, but i have found doctors are incorrect too. we need to try to find a second opinion, or else we are doomed.

The stuff posted at NIH is the result of scientific experiments and evident, so its likely to be address there too...look it up, print it and send it to get a second opinion.
Oh, one more thing: Before you raise a hell storm, ask here help based on your findings. don't blame because you will hurt their ego and they become defensive. Try to ask for help too, i am between that and loosing patience sometimes with the insurance doc, who has a difficult job to do, but I am in the one in pain, not him. Just woke up from a forced nap again, because my eye is constantly sore and my face hurts and sense are messed up. Don't quit on yourself, stay strong. this is an opportunity for you to become even better!

It frustrated me a lot, I am going to ask my GP to refer me for a second opinion, but who knows the same could happen again as its pot luck who you get to see 😐

I wouldn't mind so much if they would at least try and treat symptoms without a diagnosis but she won't even do that, she just said I don't have anything she can treat