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Old 10-26-2009, 10:27 PM   #11
glenntaj
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Default The "classic" distal "die-back" neuropathy presentation--

--is not the only one, only the most "common".

I say this as someone who experienced an acute-onset body-wide burning neuropathy of the small-fibers (as finally determined through skin biopsy--EMG and NCV) studies were normal, as was every other test except for the skin biopsy). Mine did start in the right foot, but it was in my hands within three days and all over my body in ten. No etiology was ever found, although autoimmune molecular mimicry is a leading suspect.

And--one of the reserachers I've corresponded with--Dr. Moghekar at Johns Hopkins, who has written on sensory ganglionopathy--did say the presentation sounded similar to those who get such "ganglionopathies/neuronopathies". And yes, much of the refractory nature of the problem stems from the involvement of the cell bodies in the dorsal root ganglia, which do not regenerate like axonal fibers can.

Still, if the damage is not complete, healthier cells may take over the function of dmaged ones in time. This usually involves the sprouting of entirely new axons, though, and it takes a REALLY long time--not to mention the weird sensations one will experience as these new fibers reconnect.

Truly, ganglionopathies are very mysterious, even compared to more common neuropathy presentations. But, while regeneration/recovery is difficult, if the process is monophasic, and does not continue chronically, it can occur, at least to a partial extent.

See:

http://neuromuscular.wustl.edu/senso...tml#idiopathic

http://neuromuscular.wustl.edu/antib...uron.html#sfsn

Last edited by glenntaj; 10-27-2009 at 07:06 AM.
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Kiwiboy (10-27-2009)
Old 10-26-2009, 11:12 PM   #12
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--
Still, if the damage is not complete, healthier cells may take over the function of dmaged ones in time. This usually involves the sprouting of entirely new axons, though, and it takes a REALLY long time--not to mention the weird sensations one will experience as these new fibers reconnect.

Truly, ganglionopathies are very mysterious, even compared to more common neuropathy presentations. But, while regeneration/recovery is difficult, if the process is monophasic, and does not continue chronically, it can occur, at least to a partial extent.
Thanks glenntaj, so how does one deal with this burning.Has yours settled? are you on meds? Are there any specific tests I should be asking the Neuro to conduct when I see him next week? (I guess skin biopsy--EMG and NCV) The burning, maybe due to stress levels of what I"m reading, seems to be getting worse! I'm not sure if a life of pain and pain killers is the life for me! but what options does one have? I am just over two weeks since this hit me out of the blue.
Also, does the fact that my hands are popping off to sleep with the slightest bend of the elbow or arms above the head when I'm in bed mean anything... that seems to be becoming more pronounced also. Is that typical of ganglion involvement? I read somewhere about this problem coming about because of cancer in the body?? do you know anything about that?
And finally, why, if all exposure to anything has stopped does it progress? is it a case of once the scale tips in one direction, it just keeps tipping regardless? thank you so much for your knowledge on this.

Last edited by Kiwiboy; 10-26-2009 at 11:28 PM.
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Old 10-27-2009, 02:22 AM   #13
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Ganglionopathy --is a description of WHERE the problem resides. Notice that there are many different diagnoses in that article. Metabolic, immune, toxic.
This article goes into more detail:
http://brain.oxfordjournals.org/cgi/.../full/awp136v1

One thing that does occur in that location is herpes virus.
I would get tested for this. If you have reactivation of herpes simplex or herpes zoster, these can be treated with antivirals.
Your use of poppers suggests you were in a high risk environment for viral transmission.

Herpes zoster typically lives in the ganglions and reactivates.
I'd also get tested for Hep B and C, and HIV.
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Old 10-27-2009, 03:48 AM   #14
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Ganglionopathy --is a description of WHERE the problem resides. Notice that there are many different diagnoses in that article. Metabolic, immune, toxic.
This article goes into more detail:

One thing that does occur in that location is herpes virus.
I would get tested for this. If you have reactivation of herpes simplex or herpes zoster, these can be treated with antivirals.
Your use of poppers suggests you were in a high risk environment for viral transmission.

Herpes zoster typically lives in the ganglions and reactivates.
I'd also get tested for Hep B and C, and HIV.
Would an activation of herpes cause all over body burning? and the hand pain? and/or the reduced nerve strength in my hands (numbness at night when bend elbows etc)

And my poppers use was restricted to safe heterosexual monogamous relationship use.

Thank you MrsD for your help
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Old 10-27-2009, 08:21 AM   #15
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I have no doubt that in the past you were warned that drugs (including alcohol) are toxic and could cause damage to your body. It seems that you are now aware that this warning was serious.
Before you start scanning the web for illnesses that compare with your inner feelings, just consider that you are most probably suffering from withdrawal symptoms.
Doctors know very little about the drugs that they so freely prescribe. It therefore follows that they will know nothing at all about the drugs that abusers use, including the quantities taken.
Never mind seeking medicines that will help your state of health for you cannot treat poison damage with yet more poisons. Never mind taking supplements that you THINK you may be short of. Blood tests will show if you NEED any supplements.
In a withdrawal situation, YOU are the only one who can do anything. Eat a good balanced diet, get exercise, and STAY AWAY FROM DRUGS
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Old 10-27-2009, 08:54 AM   #16
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Would an activation of herpes cause all over body burning? and the hand pain? and/or the reduced nerve strength in my hands (numbness at night when bend elbows etc)

And my poppers use was restricted to safe heterosexual monogamous relationship use.

Thank you MrsD for your help
Yes it can. One can get herpes simplex, and hep B and C from
heterosexual use. Herpes zoster is reactivated chicken pox.
You can have herpes simplex dormant for many years, and it will reactivate upon physical stress, immune changes.
Viral reactivation sometimes responds to high dose l-lysine therapy. At least one gram a day. Rx treatment involves Valtrex, or Famvir.

You can also have neuropathy symptoms from vaccines. It can take up to a year or more to have the reactions. This is due to the adjuvants, and contaminants in them, stimulating autoimmune reaction. When this delay occurs doctors don't consider vaccines, but really they are culprits in many in many chronic diseases. Just search Dr. Len Horowitz vaccine on YouTube or Dr. Blaylock. They explain this in several videos.

If you get a Temperpedic type mattress topper, having numbness in hands and arms can be minimized during sleep. But I still get a numb arm now and then even with the topper.
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Old 10-27-2009, 10:03 AM   #17
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You can have herpes simplex dormant for many years, and it will reactivate upon physical stress, immune changes.

You can also have neuropathy symptoms from vaccines. It can take up to a year or more to have the reactions.

If you get a Temperpedic type mattress topper, having numbness in hands and arms can be minimized during sleep. But I still get a numb arm now and then even with the topper.
Hep B & C HIV all fine.
I understand Herpes Simplex can cause painful blisters and some localised burning or pain at the site of said blisters, but all over body burning without any obvious blisters or redness???? Really??? including scalp, ear, arms, legs and hands etc?? are you speaking of a typical breakout, or something more sinister where the virus might migrate somewhere it's not supposed to like the CNS?

I don't think I've had a vaccine before. well not since I was a young boy at least. I usually stay pretty fit and healthy and don't often get sick. Might be my 'over active' immune system due to my Ulcerative Colitis keeps things in check.But no risk of contaminants from vaccines etc. And apart from poppers, drug use was very sporadic, not habitual and discontinued months ago.

As far as my arms going numb, I'm kind of worried that it seems to be getting worse, along with the burning (although tonight I can hardly notice it) I don't mind having to wake up and shake my arm out, but obviously this is progressing, and this continual compression is going to eventually lead to some loss of dexterity? or strength? if I continue to compress it. 6 months ago I could have slept quite happily with both arms under my chest, elbows bent, and it would have been no problem.

I guess I'm just concerned that within days, I have this intermittent burning that is all over with an increase in night time parasthesias and it's been months since any toxic exposure and I'm not diabetic remember. why now? when my system should be as relatively purged of toxins.
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Old 10-27-2009, 10:43 AM   #18
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Please search our members list for "shelley"...

She just had a similar problem with burning pain.
She had testing, and found the viral cause was her answer.

Most of her posts on this subject are recent. 2009
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