I feel this condition is now progressing to affect my pelvis. Because of microscopic haematuria I had a cystoscopy earlier this week and the urologist told me that my bladder is clear and the blood in pee is just one of those things, as is the large cyst on my kidney (also very common) and my hypertension. I had been wondering if these things are connected but she said they aren't - just coincidence

The previous week my rheumatologist explained that, because my autoabtibodies are all negative presently my small fibre neuropathy is not part of a rheumatic process. He never saw my joints when RA was diagnosed by my previous rheumatologist but he conducted a retrospective diagnosis based on my recollections of which joints were swollen and I passed seven of the criteria - only six required for diagnosis so he's cautiously agreed that I did have RA but it has remitted for now. Lyme has been excluded as has MS.

He feels that the cause for my SFN - which appears to be progressing and is now affecting both arms and legs and my mouth, nose and left eye and also my pelvis - must lie elsewhere because I don't presently have a connective tissue disease. He has taken two special genetic marker blood tests to rule out Behcets and APS. He will see me if I get a reoccurrence of the joint swelling or a vasculitic rash. But otherwise he suggested I ask to be referred to an endocrinologist or back to another neurologist.

I feel I've hit a brick wall now and am a bit depressed because my symptoms appear to be progressing and I now have a return of the vestibular symptoms that affected me for 18 months but improved dramatically when I was on oral steroids. Could this be because the neuropathy is affecting my balance? It only occurs when I'm walking but is affected by head turning and changes in lighting and most of all by changes in the ground surface. I panic with small steps now and feel as if I'm walking on a trampoline or mattress sometimes. I really need to get to the bottom of this so it can perhaps be treated at source. I see my GP on Monday morning and would be really grateful if anyone can advise me on what to ask of her in this ten minute appointment.

I have a dreadful fear that my doctors will write it off soon as CFS/ME or Fibromyalgia - which will leave me with no options at all. The only thing that stops them from diagnosing these I suspect is that I have high levels of inflammation in my blood which don't correspond with either condition. Also I have these paired Oligloclonal bands but this is only an indicator of systemic inflammation and is non specific. My rheumatologist wondered if they might relate to the high total protein and had my urine tested for Bence Jones but it came back negative. However I'm still a bit worried that there might be malignancy because of the systemic inflammation with no identifiable cause.

I can only empathize at this point. My nerve damage is everywhere. The pelvic pain is excruciating in mid cycle. While I have had improvements from my debilitating stage, my life is affected and difficult. Some days are better than others.

I have the issues with dizziness when walking or standing. It usually passes. Sometimes when I'm lying in bed, I feel like the mattress has someone next to me moving all around on it, then I turn to look and my husband is perfectly still and sound asleep.

They still have not found a cause. The next step is a toxicology dr. who works with people from World Trade Center injury from the chemicals they were exposed to. My neurologist recommended that I see her. I have an appointment set for February and will keep you all posted if she has any ideas.

Mat,

I too can empathize, and am just sorry to hear you're having these problems. I really do hope your physicians don't write you and your symptoms off. I'm really fed up with physicians, their laziness and stupidity. So many terrible stories! I can also say that at one point or other my SFN has found its way to every part of my body, inside and out. I can't say there isn't a place on my body that I haven't had at least some symptoms, whether tingling, numbness, shooting/sharp pain, electrical shop, aching, and so on and so forth. I'm not sure if that helps, but I really have had it everywhere, including in every nook and cranny...

I am sorry that you are dealing with so much. I too have had terrifying balance issues that I always attributed to Peroneal Neuropathy. To this day my feet can get tangled up and I almost trip. I tried U-Tube exercizes for balance and my Chiro gave me some stuff to do next to a wall for emergency handholds. I am always cognizant of the surface I am walking on and any height or consistency changes. It will become automatic. Sand or grass or loose dirt are the worst. I wish that I had good news about the videos or drills but it seems that passage of time was the best medicine and not a cure at that. At least the shower has become more friendly. Good Luck, Ken in Texas.

Thanks Ken, David and Healthgirl. It's horrible not having a name or a reason for our symptoms isn't it?. I'm starting to think that I might never know the cause but I do find that taking an antihistamine at night helps a little and I wake less often with less of the burning pain. I'm wondering if this means that the SFN is part of ab allergic response to something but haven't a clue what this would be - not environmental because my environment changes a lot just now and my diet is consistently healthy and relatively additive free.

I went into shock when my rheumatologist told me that I don't have a connective tissue disease now so can't blame Sjogrens or RA anymore. My thyroid is supposedly well medicated and I've had lots of other checks but nothjng flags up apart from raised to high inflammation levels. Hey ho. Mat