[Kiwiboy]

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

[mrsD]

I think Science Daily is a reliable source.

What strikes me is that if an adenovirus can deliver a gene, I wonder what viruses that infect us also are capable of damaging the dorsal roots? Already we have Herpes Zoster as a causative agent, and I wonder what others are floating out there?

Also, I'd expect there to be a LONG time period before it becomes a therapeutic reality. And if and when it comes, VERY expensive.

[pabb]

Originally Posted by Kiwiboy

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

i am sorry for the depression, but i really like your humorous post......and the part highlighted try a gluten free diet....paleo would be even better. good luck

[Kiwiboy]

Originally Posted by pabb

i am sorry for the depression, but i really like your humorous post......and the part highlighted try a gluten free diet....paleo would be even better. good luck

Thanks Pabb, one must be humorous, even in the face of this. when humour goes, its time to pack it in I think. When all this started, I was loosely following the diet outlined in 'Breaking the Vicious Cycle', by Elaine Gottschall. (for my Ulcerative Colitis) which is no Gluten, no sugar etc. Essentially an elimination diet to start with, slowly reintroducing things as you can handle them, but all that went out the window when this pain started..As the diet required a lot of energy in planning/will power etc, and all that went out the window. I suppose I thought, my Colitis isn't going anyway, it can wait. Unfortunately, this has really knocked the wind out of my sails ! Also, what is 'paleo' a type of fruit ?

[glenntaj]

--you and pabb and Mrs D already have most of the comments/bases covered that I would have touched on, Kiwiboy.

I do think that this paper and the mouse model is very much in the tradition of twenty-first century research into neurological research that attempts to regrow hard-to-regenerate neural tissue by genetic manipulation--there's been a lot of work within this paradigm investigating possible spinal cord regeneration for those with traumatic injury (especially given the military injuries from Iraq and Afghanistan)--but that application to humans is a long way off. There have unfortunately been a lot of dead ends regarding genetic manipulation and nerve growth factors when the research that worked well for small mammals was then attempted with primates, even before getting to human trials . . .

Science Daily is OK--is just tends to aggregate and report on studies that have been accepted to more specific scientific journals. One can go to PubMed or Google Scholar and often get the original study and related studies.

And yes, neuronopathy of the dorsal root ganglia is not very well understood, though it tends to have the non-length dependent characteristics you've described. Since it's very hard to image dorsal root ganglia, evidence of the process is sort of indirect. Toxic and autoimmune mechanisms would seem to be primary etiologies. And while some have reported some improvement with immune-modulating therapies--steroids or IVIg--improvement is often patchy at best, because we haven't yet found good ways to get nerve cell bodies to repair, and these are what are damaged in neuronopathies; the immune modulating therapies seem merely to slow down or arrest the damage process, allowing other cells to take over some functin from damaged ones. Unlike axons, which can regenerate if damaged when the cell body is intact, if cell bodies die, they are not normally replaceable. That is why the genetic manipulation studies are so exciting, if we can re-program cells to re-grow or become the specialized sensory cells of the dorsal root ganglia.

[Kiwiboy]

Originally Posted by glenntaj

the immune modulating therapies seem merely to slow down or arrest the damage process, allowing other cells to take over some functin from damaged ones. Unlike axons, which can regenerate if damaged when the cell body is intact, if cell bodies die, they are not normally replaceable. That is why the genetic manipulation studies are so exciting, if we can re-program cells to re-grow or become the specialized sensory cells of the dorsal root ganglia.

Thanks Glenn , another informative response. One thing I am still struggling to grasp is - if, lets just assume for a moment that my Neuronopathy *is* toxic in nature, due to long term exposure to a recreational inhalant. why would the burning & pain etc come on months after cessation of said exposure. I did read somewhere, for example, that the lapse between exposure to Nitrous Oxide and onset of neuropathy symptoms can be anywhere from 3 months to 5 years. One might expect, immediate damage from toxic exposure, resulting in immediate symptoms? Although I was having night time, ulnar nerve parasthesias in my left hand for 3 months prior to any pain/burning.

Also, the link you posted earlier: http://neuromuscular.wustl.edu/antibody/sneuron.html

I'm guessing I'm in the 'Sensory Neuronopathy - Small Fiber' camp.(the bottom of the list on that link) The information states, "course - Progressive" I would never ask anyone to predict the course my Neuronopathy is taking, but it seems to have reached a plateau of sorts. following your onset Glenn, did you notice any remissions, flares, or did it simply reach an early peak and has slowly been resolving over several years? (or anyone else for that matter?) I guess what I am hoping is, as with autoimmune, toxic exposure Neuronopathies may also stand a chance at some resolution over time, like you have said, when remaining cell bodies take over the role of the 'deceased' and I take it there is no way of knowing the extent of damage (again, without being dead, in which case the answer is largely irrelevant). Does the plateau in symptoms indicate the peak of progression, or can these neuronopathies progress insidiously over years? It does concern me the muscle fasciculations I get potentially indicates some slow progressing motor involvement. But as I can't get a Neurologist to acknowledge anything neurological is even occurring (because I haven't lost pinprick sensation and I don't fall over when I close my eyes etc etc) it's hard to go much further or even stand any chance of arresting something that may be....well, arrestable (is that a word?)

[mrsD]

The nitrous exposure takes into account the damage to B12 for a reason.
Your liver stores up to 5 yrs worth...so when that is gone, that is it.

I think viral damage to the dorsal roots is more likely.
Biology is finding infectious agents to be just about the cause of everything. Sometimes they are a trigger, but sometimes not.
For example even in people with obesity, there are antibodies to certain rhinoviruses that non-obese do not share.

[cyclelops]

UC is autoimmune.

My research neuro says.....ALL small fiber neuropathy is essentially autoimmune.

I would wonder if IVIG would work? Altho they say it does not work very well for ganglionopahy, but I would consider a course of it, if you can get it.

[Kiwiboy]

Originally Posted by mrsD

The nitrous exposure takes into account the damage to B12 for a reason.
Your liver stores up to 5 yrs worth...so when that is gone, that is it.

I was only using Nitrous as an example of delayed symptom onset that I had read about. My potential toxic cause was Amyl Nitrite or 'poppers' (commonly confused with Amyl 'nitrate' but actually two very different substances)