After five rollercoaster years of a diagnosis of non-eorosive, seronegative RA - my immunology has at last yielded clear positive results. I've had to be allowed to become rather unwell for this to happen but my ANA is now a clear positive, elevated IgG and IgA - CRP has risen slowly from 2 last year to 19 and my PV is 1.98. I'm to have a lip biopsy and ultrasound of salivary and carotid ducts over the coming month.

Meanwhile my rheumatologist has expedited my next appointment to 22nd August. I'm hoping this at last brings an acknowledgment that my SFN and possible Dysautonomia are part of an inflammatory process that needs modifying again. I have already tried for DMARD medicines and am severely allergic so it does mean that options will be limited even if I'm rediagnosed at last with Lupus, Sjogrens or UCTD. But turning gradually more and more numb - to the point where my mouth and left nostril and eye feel permanently anaesthetised - doesn't feel like a good option. I'm feeling permanently tired and vaguely disorientated/ dizzy because of proprioception issues now. I eat very well, research my GI issues and have tried eliminating gluten and dairy to no useful end. I have followed my new neurologist's advice and got back to simple yoga and gentle aerobics. But my balance is still off despite attempts to retrain my brain.

Two neurologists have so far shrugged it off as mild SFN and have felt it unrelated to an ongoing disease process. I am therefore seriously hoping they are now proved wrong.

Several of the members of this community have helped me push for answers more than words can express - I think you probably know who you are so please know how grateful I am. Onwards and upwards!

It's odd to say I'm 'happy' about positive results...but in your case, it means answers!!

First, I must ask what was the actual result for ANA (the number) and pattern?

The number tells how high it was, but more important is the pattern. There are four different patterns that are typically associated with certain AI diseases:

Homogenous---Lupus and mixed connective tissue disease

Speckled---Lupus, Sjogren's, Scleroderma, RA, and mixed connective tissue disease

Nucleolar---scleroderma and polymyositis

Centromere---scleroderma and CREST

At least now, testing will move forward...and therefore, more answers. Your pushing and yet patience have paid off.

Hello Enbloc. I can't access my results so don't know the breakdown yet. But I'm guessing, from the fact that I've been referred for a lip biopsy and MRI of carotid and salivary ducts ASAP - that it's either the Homogeneous or Speckled category. The numbers she told me were 1-320 and she said that this is non specific but with raised IgG and IgA and the high inflammatory markers and SFN - it would be highly advisable that I have the lip biopsy to rule in or out Sjogrens decisively. She said that it is possible to have Sjogrens without much mouth dryness and only mild Sicca. But without a positive lip biopsy result I'd be unable to try anymore immunesuppresant medications (and there are still a few left apparently) unless my RA symptoms return once more. Hope this explains.

Ps to Enbloc: I managed to get a copy of the rheumatologist's clinical letter and he only says that my ANA is positive 1:320 but the rest of my ENA is negative - no pattern outlined. Meanwhile my IgG is 13.80 (5.50-13.00) and my IgA is 4.37 (0.50-4.00). The PV and CRP are both high and my RBCs are high too - these three have almost always been raised to high though.

Certainly, they checked the pattern...it's standard to do so. He may know and just didn't mention in his report.

But, it sounds like they are pushing forward to test for various things...which is good.

How soon will these be done? When do you see him next?

I spoke to him on phone today. Unusually for NHS rheumatology he's brought forward my consultation to 22nd August - two months after my first one with him. He will have lip biopsy and ultrasound results back by then. I fear that I will be abandoned by them if this shows negative though. I didn't ask for a verbal breakdown of my ENA pattern. His English is quite hard to understand and it wouldn't have meant enough to me.

My GP was thinking my high inflammatory markers might be tracked down through yesterday's colonoscopy, but obviously not. I have been told by several people on Sjogrens helpline that SJS is not commonly associated with a high PV and CRP. And the rheum makes it clear that seronegative RA would onlynvery rarely cause SFN. He thinks Lupus would have caused kidney and lung problems by now as I'm post menopausal. I admit I'm still very anxious about Multiple Myeloma now I've read my blood results -including the raised RBCs. Heck why was I born such a worrier?!

Hi MAT,
I have posted here before. I just had a lumbar puncture which showed two paired Oligoclonal bands (not in serum, just spinal) AND was diagnosed on nerve biopsy and EMG with a dysimmune neuropathy - basically axonal and demyelinating. He is calling it a sensory version of CIPD. I initially came up on serum as positive for paraneoplastic antibodies but they were not positive on western blot; however, that test is still pending on my spinal fluid and we will get them back the end of next week. I did have a negative PET/CT scan.

I have a positive ANA, homogenous and speckled, but very low (1;40). I also have Raynauds and anti cardiolipin antibodies which have run the gamut from relatively high in the last ten years (70's range to negative, which they are today - check me tomorrow it might be up again, lol). I also have low serum complements c1q c3 and c4 which are usually associated with lupus.

I went to a very well known neuro research specialist in NY and the best we can come up with is a DYSIMMUNE syndrome - basically, SOMETHING got to all three of my systems. I have the CNS oligoclonal bands, I have failed autonomic tests and now this peripheral stuff. I have tons of cranial issues too (pulling sensations, eyes and throat burning, eyebrows dropping, face twitching, weird face movements). I also have a very high anxiety level -as the dr explained, the CNS is trying to fight an antigen or antibody so thats not unheard of to have psych issues.

I feel very lost that we cannot find this offender. It is ruining my life. I truly believe this is paraneoplastic because I literally "broke" over the course of three months in late 2013- with seizures, headaches, the neuropathy starting, etc. But yet I have had weird immunological markers for a decade before as well as a small neuro episode very similar 15 yrs ago so maybe it was building and building for a long time (unlikely to be paraneoplastic that long). We are going to try IVIG in the next few weeks as well as an IV of antibiotics for LYme because I definitly have exposure in my serum. It wasnt so clear in my CSF.

Anyway, I just wanted to let you know I UNDERSTAND on the spacy, foggy, not yourself and "this is definitely more than just a neuropathy" I am actually seeing yet another rheumy on Monday. I was wondering about sjogrens myself. THis is crazy. I can't believe no one can figure out why my immune system is attacking itself all over!!!!!

Best,
L

Oh this sounds really hellish - poor you of course I can relate. I've been researching more because I'm preparing myself for a negative result from lip biopsy. My SFN didn't show up in skin biopsies taken from my calves over a year ago - and I can't quantify how much it has progressed or not since then. I need it to show up in order to qualify for further treatment such as IViG or Rituximab. What I find most depressing presently is the amount of pain in my feet and legs again. This stopped for a while - apart from tingling numbness. Now the pain is back full throttle and encompasses my knees now too. The only visible sign I notice is that my feet and ankles go a blue-ish purple with Livedo if exposed to air. Otherwise I have no way of knowing if the acid dunking sensation is real.

When my knuckles lock during the night and are painful so I can't move the duvet or pillow - and are swollen of a morning - I am reasonably sure this is my RA. This visual clue reassures me - and allows me to deal with the night pain better. But the horrible burning neuropathy makes me grumpy bad miserable. I hope my Sjogrens lip biopsy proves positive. My new rheumy says SFN is not part of seronegative RA. Which leaves me high and dry unable to access further treatments until either a vasculitic rash shows up and cryoglobulins are positive or else my RA comes back properly. It is sad to want these visual clues so badly I know - but I do nonetheless!

Good luck with IViG. Mat x