Okay, so my symptoms today got really bad (all over burning, face, scalp, forearms, back of legs etc) and were driving me crazy. I went back to the ER at the hospital and told them how much intense pain I was in, hoping in vain to get some answers or some tests. I was also worried because I have been getting a little faint if I get up to quickly, thinking I might have some autonomic involvement. They checked my blood pressure lying down, then standing up. and they were the same. 110/70. Had an ECG, all perfect they said. BP was 100/60 when I first arrived though which I think is low yes? but they didn't seem concerned. Something that may be unrelated, I have had a little 'electrical sound' in my ear, like a little buzz that happens every once and a while. started last night, might be nothing, but thought I'd mention it in case.

So, if you read my first post, you'll know that this started about three weeks ago for me. It started with pain in my hands, progressing to burning sensations all around my body which continue, accompanied by night time parasthesias in my hands. This time at the ER, they actually got a Neurologist to come and talk to me. He did the usual tests with the reflex hammer, strength testing etc and when I ran a few things by him, he just said, I didn't have the signs of a 'Neuropathy', because it is not fitting the usual stocking/glove presentation. Well, then when I ran the 'ganglionopthy' and small fibre Neuros scenario past him, (that was discussed in my last post with Glenntaj & MrsD) and I didn't really get much of an answer. He kind of said, that a diagnosis of what I seem to be experiencing is one of presentation, or 'if you have burning skin sensations, then you have burning skin sensations. Obviously I found this helpful. Apparently here in New Zealand we don't do the punch test, so the road of investigation is closed there on me. I asked him about anything viral being responsible and he said being that all my blood tests had come back 'normal' and I had no 'breakouts' or bodily lesions then there is probably no active virus and it was unlikely. C reactive Protein not showing any inflammation. (obviously it can't feel how my skin feels!). I shall list some of the ones I think might be important for analysis. I know what will be said about my B12 which is 357 and was 499 on the 20th of July, so yes MrsD, it has dropped. Could a drop like this be causative? or simply, not helpful? Even the Neuro said, "and you're B12 is fine" and he doesn't think the parasthesias are related. I asked the Neuro if he thought we should analyse my CSF and he said that there is little indication for such a 'risky' proceedure. Surely Analysis of CSF with presentations such as mine would be standard?

I still have my booked appointment with a Neurologist in four days time where I will have an hour with him. I only had about 30mins with the Neuro in the ER and when I asked him to read the pubmed article on Non-length-dependent Small fibre ganglionopathy I'd printed off, he kind of smiled and shrugged it off, but he did read it. I kind of get the feeling, down here in the South Pacific, I'm going to be limited in how far I can really get with my diagnosis. Either through our lack of PNeuropathy specialists, or our testing procedures, or desire to find answers are lacking.

I think Glenntaj, you kind of answered my question in my last post, you think this is or could be SFG or just some super fast acting SFN??please forgive my amateur questions. what was your Dx? SFN or SFG or is it uncertain? How can you tell? and does it really matter? Does it settle? I guess I just realy want to know if anyone else has had this body wide burning that moves around, are there any other explanations? or is it just time to start scoffing the Amitriptyline and accept I may never know?!?! I had to wear a suit today for work and it felt awful in the heat, I can't imagine what the middle of summer is going to be like! Dark thoughts entering my head regularly lately trying to accept this may be my fate. I read on here how many of you have suffered so long. I'm just not sure I can do this for another 30 or 40 years !

Thyroid 0.67 mIU/L ( 0.30 - 4.00 )

B12: 357 pmol/L ( 170 - 600 )

Folate: 19.0 nmol/L ( > 10.0 )

CRP: < 1 mg/L ( < 5 )

Magnesium:0.96 mmol/L ( 0.75 - 1.00 )

Neutrophils: 3.77 x10e9/L ( 1.90 - 7.50 )

Lymphocytes: 1.64 x10e9/L ( 1.00 - 4.00 )

Monocytes: 0.31 x10e9/L ( 0.20 - 1.00 )

Eosinophils: 0.20 x10e9/L ( < 0.51 )

Basophils: 0.03 x10e9/L ( < 0.21 )


Any other ones I need to be lookng at? I did ask my doctor to tick all the boxes possible. For heavy metals he just wrote on the form "Heavy metals" and when I got to the lab, they said, which ones? So then they tested for none because it didn't say which. Any comments or advice is much appreciated. This forum gives me some hope I might get answers.