Most people contributing to this forum appear to have fairly typical Neuropathy (starting in the extremities and slowly creeping proximal, or even better, being contained distally) at least as far as I can tell. I would like to hear from others who think they may have this more rare form of 'Neuronopathy' creating the delightful, all over burning (including the face, scalp etc), that for me, started over a few days just a couple months ago. (I also have painful hands & feet, like they are in a vice sometimes)

I'm wanting to find others as obviously treatments and prognosis is (I'm guessing) quite different to your 'run of the mill' Peripheral Neuropathy, and any successes with this type of 'Neuronopathy' or knowledge of advances in therapy would I'm sure be well received here. Although I'm sure Glenn will be aware of any treatment with respect to this particular problem long before most as he does seem to be a man connected

I pinched the link below from the thread filipe started (thanks filipe) and wanted an opinion (once again) from Glenn on this article? (please don't tell me you've gone away somewhere for Christmas early) Thank you MrsD for your comments already noted from filipes thread, differentiating between neuropathy and a neuronopathy and that the study used a mouse model with inherited neuron dysfunction, but I note the article also said "The authors hope this approach could be developed for treating different forms of DRG sensory neuronopathies". which has got to be the first positive thing I have read relating to this condition (and I have read that line twenty times over accordingly)

http://www.sciencedaily.com/releases...0615171509.htm

Is 'Science Daily' a reputable source?

Being that my suspected (unfortunately self-diagnosed at this stage via this forum and plenty of reading and a process of elimination) problem is 'probably' a Neuronopathy, indicated by acute onset body-wide burning. Again 'probably' toxic in nature. My question is: are they saying (this is where I need a little help to decipher medical speak) this sort of treatment (administration of DRG-targeted helper-dependent adenoviruses etc etc blah blah) seems to help genetically dysfunctional DRG Neurons, and MAY help to regrow/regenerate new neurons/cell bodies within the DRG? In other words, can this potentially help if there has been 'cell body' or 'neuron' death within the DRG. How do you read it Glenn ? or any others with more knowledge than myself (I'm learning more everyday) Basically, what/who are they saying it might help? are we with toxic or autoimmune neuronopthies excluded from this? Has anybody had any correspondence with Lawrence Chan and/or any of his colleagues at Baylor College of Medicine, Houston?

And yes, I certainly understand the clinical trial process and any treatment would likely be years off, being that I have been patiently waiting for years for a 'cure in a pill' for my Ulcerative Colitis (hopeful), cripes, I'm not even in the right country even if this treatment were successful/relevant & available tomorrow and sorted out this dreadful situation I find myself trying to come to terms with. mind you, I would attempt swimming to America and then running Forest-Gump-style to Texas, if I thought there was a worthwhile treatment at the other end ! (maybe I could try faxing myself to Houston, now there's a thought)

Being that these DRG Neuronopathies are: a) seemingly rare, and b) hard to conclusively diagnose unless you're lying naked, toes-up on a coroners shiny table, how does one go about becoming part of a study (or jumping the queue essentially). I don't suppose if the researchers in these big fancy University hospitals in the U.S. want a Guinea pig desperately enough, they fund your flights halfway round the world (from NZ) and give you a nice comfy bed (with a view) while they set about poking and prodding you do they? (once again....hopeful )

It's fair to say I'm riding the depression rollercoaster right now, going through the grief/sense of loss of (at 33 yet another facet of) my health. Forgive me if I'm ranting and asking seemingly silly questions, but I've got a fair amount riding on keeping hope alive right now