Were you ever tested for celiac with blood work or scope? That can take a long time to heal the nerves. Also RA is an autoimmune process that has a name. Many don't. Whatever is attacking your joints can also be going after nerves. Do you also have dysautonomia?
Also, would your doctor let you try the plaquenil for the RA? I have a friend who only has an official diagnosis of RA and her doctor offered it. As far as I know that would the only other thing that would be offered. Were your vitamins and minerals checked? b-12, b1, b6, D, E, folate, iron, ferritin, copper, ceruloplasm, zinc?

Hi health girl. Yes, I was tested for celiac. Negative. I did have positive anti-gliadin tests showing the gluten antibody.

And you're right about autoimmune processes without names. Even my rheumy told me she sees neuropathy mediated by autoimmunity that doesn't fit into any existing autoimmune disease. She said it could just be a separate mechanism where my immune system is going after my nerve tissue. I don't know about gluten, to be honest.

I have been anemic all my life (iron deficient) and still have issues getting my iron up, although supplements DO help, it's just slow. B6 was lowish, but normal. B12 was lowish, but normal. B1 was fine. D was extremely low, but improving. copper and zinc were fine. Folate was lowish, but normal. I am supplementing all of these things.

When I was 19 (I'm 31 now) my longest toe on each foot went numb and have been numb since. I never thought much of it until all of my toes went numb last year and progressed to this full body neuropathy I am dealing with now. I think the incident when I was 19 was the beginning and I have had an autoimmune mechanism happening for a lot longer than I initially thought (RA didn't start until I was 27) - something definitely proceeded the RA. but with these normal inflammatory markers and no other symptoms, I am lost.

Have you seen Dr. Oaklander's lecture about SFN?
She talks about SFN that starts in young age, the high prevalence of autoimmunity and the effectiveness of immunological treatments.

I must say thanks for posting this video here stillhoping. What an amazing woman Dr Oaklander is. I've read some really excellent published material by her as well but never seen her talking on video before.

I'm interested in this thread because I do have confirmed Sjogrens,which presented as RA for a few years. But also because I think my SFN is milder than what many describe, but is very longstanding and widespread/ diffuse and has plateaued so that most of my sensory issues relate to past damage of small nerve fibres, which I believe is permanent i.e cannot be regenerated now.

However, having spent most of the past two years off immunesuppressants and steroids, my full on RA symptoms haven't returned. And the burning and tortuous SFN pain have mostly disappeared so I think damage has been done now and my confirmed Sjogrens has been responsible for what has been and is now busy attacking my tendons everywhere instead.

For this reason plus a marked increase in my more classic Sjogrens symptoms, I'm starting Cellcept today, another disease modifying antirheumatic drug and also an immunesuppressant. As Imuran hospitalised me twice last year with pancreatitis, this is no small undertaking but I feel the rheumatologist would not have recommended it had it not been important to dampen my overactive immune system and tackle system wise inflammation levels once more.

To me your rheumatologist seems quite wise to say that your peripheral neuropathy is most likely to do with a pre-existing inflammatory process, but I think that if you want to find out about Sjogrens you should be allowed to have a lip biopsy. However in my case a lot of things only showed positive when I came off my gluten free diet and stopped taking Methotrexate and steroids. If your RA symptoms have gone, your bloods are normal but your need to know what is causing your numbness is still great - then perhaps you need to stop the Methotrexate and give your body a chance to be free of the toxicity (I mean by this that it is a cytotoxic drug) and see where this goes?

This is what I did about two and a half years ago but I only had a diagnosis of seronegatuve RA that was non erosive and was tolerating, even a low dose of injectable Methotrexate, very badly (GI issues). Now I at last know what my real problem was all along, i.e. primary Sjogrens, a lot of things have fallen into place for me. And neuropathy has been more of a worry to me than the joint and tendon pain - especially now I now that this is kind of RA is non erosive in my case.

So I think many doctors including my neurologist, do a great disservice to us who suffer from what they class as ideopathic neuropathy, by not confirming or relentlessly tracking down the cause (or giving us support and free reign to). All info on SFN says that if you can find the source then you should treat it ASAP i.e. if prediabetes then treat the diabetes etc.

Looking back my late dad had neuropathy from a young age and also gout and hypertension, but he only developed late onset diabetes when he was in his late 50s and he had his first full scale heart attack. However he used to walk with a cane from my first memory of him and often suffered from disequilibrium and fell easily. My mum always maintained this was because he was mildly deaf and over anxious about his health. But he had hyperacusis rather than hearing loss and I think this was probably part of his neuropathy. Looking back I can see a lot of my own symptoms in him and for me it has manifested as Hashimoto's and Sjogrens so I'm more autoimmune than he was. Nevertheless I'm now walking with a cane and can relate to him much more strongly with hindsight.

So I'd advise you to do whatever you need to do to get clarity on what is behind your own neuropathy -whether that leads you to lip biopsy, endocrinology and neurology and even brain MRI and lumbar puncture as I had. For me it's been worth every horrible investigation to know what is going on for myself. And once you've found out you can push for a more targeted treatment? But of course if the RA comes back you may need steroid shots and Methotrexate again so it is a definitely a risk you need to weigh up for yourself.

And as you know Coeliacs is an autoimmune disease too as is Pernicious Anaemia - so untreated these might well have done some long term damage to your peripheral nervous system? Perhaps your rheum is right to say you need look no further? Mat