Originally Posted by MAT52

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.