[imaginegoodthings]

Hi everyone,
I'm a newbie who has been reading this discussion board for the last month or so.

I've been diagnosed with sensory ganglioneuropathy (or ganglionapathy) (though the problem could be in my nerve root system instead of the DRG).

I'm a female college professor in my early fifties. Two years ago I started having numbness in my hands 24/7, then in my feet as well. For the last year, I have experienced serious impacts on my fine motor skills (e.g., buttons, handwriting, unable to open lids or put on earrings easily, shakiness using a spoon or fork--you name it)--and on my gross motor skills (e.g., balance, climbing stairs). I have not driven a car for over a month, and I feel I am losing my independence.

From those of you (En Bloc? others?) who have lived with this condition for a longer period, what is life like? Can you still walk/work/write? In other words, as this condition progresses, how debilitating is it?

I am focused on staying positive and counting my blessings--two beautiful children (one young adult, one starting high school) and a 30-year marriage. But I am also trying to see where my life is going.

Other than this, I've been healthy; tested negative for other potential conditions and causes.

Your thoughts and insights appreciated.

[en bloc]

It's really not how debilitating it is, but what you make of each day regardless of debilitation. On paper, I'm a wreck and probably shouldn't be alive. Pacemaker creates 70% of my heartbeats, open heart surgery (and 3 other heart surgeries), severe autonomic dysfunction requiring numerous medicines for daily function and pain is chronic and draining. Then of course, there is the side show of annoying Sjogren's symptoms and a blood clotting condition that produced 3 strokes (luckily smaller ones), numerous TIAs and too many superficial clots to be counted. But regardless of what's on paper, I continue to drive on. Sure, I have things I can no longer do, but trust me, you can find ways to accomplish most tasks. I use a cane for balance and must look at my feet when I walk (lack of proprioception), but I can still manage some work in my veggie garden...it just takes more time and a different approach. I can clean my house, cook meals, and enjoy short outings. Of course I have bad days, but it's to be expected and I don't allow them to depress me. I'm on SSDI since 1996 (I'm 48 now) so I don't work. But I strive to accomplish 'something' every day...regardless of project size. I have similar fine motor skill problems as you, but I'm sure you've found that difficult writing and handling of small objects doesn't stop your day.

You seem to have the right attitude...positive and being grateful for what you DO have, not what you've lost. As you know, there isn't effective treatment for ganglioneuropathy. It's all about symptom control as best you can. Even though we may share the same condition, we will progress at completely rates with different symptoms. So there is no way to gauge what your future will be like based upon what someone else experiences. Heck, I don't even try to imagine my own future. Just live for today and make the most of it.

[glenntaj]

--there is yet no effective treatment for ganglionopathy/neuronopathy, beyond trying to create an optimum healing environment in one's body with proper diet and supplementation (one of the reasons a lot of us around here take large doses of B12 and other vitamins/minerals that help support nerve function). But a lot of the progression of the condition depends upon the extent of damage and exactly where it occurs in the dorsal root ganglia.

Ganglionopathy/neuronopathy differs from other peripheral neuropathies not only in location of the initial attack but in what part of the nerve cell is attacked. In most other neuropathies of an ischemic or metabolic nature, the axon or nerve shaft, or, in the case of demyelinating neuropathies, the meylin covering that insulates that shaft, are subject to deterioration first--damage to the cell body, or soma, is secondary to that, and happens later. In ganglionopathies/neuronopathies, though, the initial attack is on the cell bodies in the ganglia, with damage to the axons or myelin secondary.

There are some situations in which both cell body and axon are attacked sort of simultaneously--certain infectious and toxic situations most notably.

The trick here is that while damaged axons or myelin, given the proper conditions and removal of the cause of damage, may well regenerate (or new axons may grow from the cell body to take over function), cell bodies are a lot less likely to do so once damaged. Until recently, in fact, the general consensus in the medical research world was that once a nerve cell dies, that's it--that pathway is gone, and though regenerating axons from other nerve cells might take over some of that cell's function, this was not something that could be regularly counted--recovery would likely be patchy and incomplete. And, of course, mature nerve cells do not divide and reproduce, so dying cells deplete one's overall total. Some more recent research into stem cells and the like is beginning to question this (there may be some nerve cells that can reproduce under certain conditions), and one day there may be neuroregenerative therapies, such as those that are being worked on for spinal damage patients, that may be applicable to the ganglia, but that realm is still in its infancy.

Still, at one time it was thought that even axons could not regenerate--we have since obtained considerable evidence that is not the case (and there are certainly people on these boards, such as myself, that do have skin-biopsy documented axonal improvement over time). So I don't think you have to consign yourself necessarily to progressive deterioration.

Your eventual prognosis would also depend on which nerve cells are affected--the large majority of neuronopathies are primarily sensory.

See:

http://neuromuscular.wustl.edu/antib...on.html#canvas

http://neuromuscular.wustl.edu/nother/axon.htm#drg

http://www.nature.com/mt/journal/v12...20051298a.html

http://www.mendeley.com/research/dis...-disc-in-rats/

http://www.bioportfolio.com/resource...a-Neurons.html

http://www.jneurosci.org/content/4/7/1736.full.pdf

http://onlinelibrary.wiley.com/doi/1...7.00695.x/full


As you can see, there's a lot of research interest in the dorsal root ganglia, though much of it involves reconnection to the spinal cord and at this time mostly just rats are involved . . .

[imaginegoodthings]

en Bloc and glenntaj:

Thank you for your insights--it's really helpful to hear what other people with DRG conditions are doing and how you are coping. I'm going to read all of the links you suggested, glenntaj, and follow up on the vitamin suggestions, per en bloc's post. I really appreciate it!

[Aussie99]

Hi Imagine.

I am sorry to hear about your problem. I have myself read conflicting information on ganglionopathy and it's hard to know what is correct. Some sites say its not symmetrical and purely sensory. Others say its large & small fibre and proximal. It's hard to get clear concise information on the net.

Do you know what your neuro based the diagnosis on? Did they do any testing?
What therapies were recommended to you?

This may sound simplistic but did you also get checked for vitamin deficiencies?

It sounds as if you have a good support system at home and it is truly a blessing to have the love and security of a family.

Wishing you the best
Aussie