Hello. I'm very sorry about your RA diagnosis but very glad of this post and the resulting thread. I have been asking the same questions here for a while but am not a great deal the wiser, even though I do at least know a lot more than I did, thanks to these wonderfully well-informed people who have replied to your question. I'm also a non scientist so struggle to take in all the info about B cells and T cells a but it doesn't stop me trying and as Kiwi says "knowledge is power".

My own story is that I was diagnosed in 2011 with seronegative RA. Five years on and my CRP, PV/ ESR are still highly fluctuating and always raised despite no longer having signs or symptoms of active RA. Furthermore my Rheumatoid Factor has gone from weak positive to negative but my ANA is now a clear positive and some of my immunoglobulins are too.

My small fibre neuropathy is widespread and has been for some years - it probably started prior to my RA symptoms. I'm also hypothyroid. I have had many investigations including lumbar puncture, skin biopsies, colonoscopy, cystoscopy and have been unable to continue with Sulfasalazine, Methotrexate, Hydroxichloraquine or Azathioprone (sorry but I'm based in Scotland so may be using different brand names if you are based in US) because of severe allergies to these.

I am shortly to have a lip biopsy for Sjogren's Syndrome. My third rheum feels it is very unlikely that seronegative, non erosive RA would cause a small fibre neuropathy of this magnitude. I'm guessing that he's now looking for a different diagnosis for me thinking that I never had RA - or perhaps have a very mild version that coexists with other connective tissue diseases. I think the idea is that RA is principally a disease that affects the synovial fluid around the joints and tendons. It would have to be aggressive and erosive to cause the small nerve fibres to respond in the way that mine have. So he is sure RA is not the cause in my case. But then he never saw my very classic presentation of this disease in my hands and wrists five years ago.

He is looking at primary Sjogrens because this can often damage the peripheral nerves and present sometimes in a very similar way to MS - as mine appears to be doing. Failing a positive result from the lip biopsy I suspect he will rediagnose me with UCTD - an undifferentiated mix of connective tissue diseases including RA and possibly Vasculitis. Increasingly I believe I have a broad mix that includes CREST/ Scleroderma and RA. My skin is changing on my hands and feet and I have many tiny tengliestasis all over my face and palms of my hands and nail bed, indicating Systemic Scleroderma. But this is just self diagnostic stuff. We will see!

Meanwhile the neuropathy is flaring terribly just now and I'm not aware of any vitamin deficiencies, dietary changes or lifestyle changes that might have triggered this flare up. I've tried being gluten free, dairy free, deadly nightshade avoidance, no caffeine, no sugar etc - none have helped apart from avoiding refined foods which inevitably gives us a more fighting chance. I'm totally fatigued and find it hard to stand up for more than a few minutes. All is stinging and burning just now - including my mouth, cheek and one eye, but I refuse to take any more meds that will only address my symptoms rather than modifying the cause of my problems. I have recurrent yeast infections and strange new constipation and vertigo. I take several suppliments but the only ones that have helped to date are AdCal D3 and possibly Acidophilus. Best of luck with the Methotrexate. It was very effective for me but finally made me too nauseous even by injection.

I hope this helps. Mat

Hi David

Like you I'm hesitant to get any genetic testing - as yet have found no connection between MTHFR and autoimmune Addison's (I'm researching the Fibromyalgia link for a friend) - however I suspect there may be a genetic component to my Addison's as there are other autoimmune conditions in my family.

I'm using the MTHFR acronym very generally in my above post as there are at least 40 different variations of MTHFR and different variations can produce different effects which require different management. So B12/Folate may be only one part of the answer. To me, that would be the main reason for testing - if test results indicated a specific variant then it may help me manage the Addison's better.

Addison's is incurable and management is the key to trying to have a somewhat normal life. The stubborn side of me refuses to accept that this is as good as it gets - which is why I keep researching.

Hi Bluesfan,

Thanks. I hear you. We all need to keep striving, I think, and to be stubborn. I mean, as long as we don't get crushed if it doesn't improve or if we have setbacks. I'm realistic, but I also don't want to give into despair or to assume that just because conventional medicine and science don't know much here or don't invest in research we should just give up, quietly sitting aside and letting things get worse. I won't go down with a fight.

Well, I think I'll stick to taking my B12 and folate and not have the testing. I don't think it will help me. So we are indeed in the same boat in that regard.

I do hope you find relief somehow and in some way. I'm still looking for the cause of my SFN and other symptoms and working my way through the natural approach.

Have a great weekend!