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Old 01-24-2012, 11:55 PM #1
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Question Peripheral Neuropathy or RSD? What have you been diagnosed?

These 2 diagnoses seem to go hand in hand. I have PN diagnosed by my neurologist (SFPN actually), and RSD diagnosed by my pain specialist (who implanted my SCS).

I'm wondering how others describe their pain.
Maybe this is a question that should be posted on the Chronic Pain forum, but some of our SCSers are wondering what the difference is because it might dictate whether or not they are considered a candidate for this implant.

I hope MrsD sees this so she can give her input.
I'll send out a pigeon with a special note to get her attention

Thanks
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Old 01-25-2012, 12:36 AM #2
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Smile A Pigeon?

Better warn MrsD to be wearing a hat! Once my sister-in-law caught a full.... um.... splash.

As for me it was radicular peripheral neuropathy 'cause of the permanent nerve damage up there in the lumbar area.

Oh, and today, I went to work without WITHOUT my remote!! It was turned down from the night sleep, and by late morning I was burning like the fires of ....... tears before I made it home to retrieve in early afternoon. Relief right away after I had my precious remote in my grasp, and ramped it up. Good thing, that, because afterward, found myself pushing out some truly superb work for the day. That felt much bettter.

Not burning now,
Mark56

Last edited by Mark56; 01-25-2012 at 10:14 AM. Reason: typo, fingers flying too swiftly
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Old 01-25-2012, 05:32 AM #3
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No need for the pigeon! LOL

RSD is a form of neuropathy... that only affects the sympathetic nerves.

The traditional PNs are complex and there are many causes.
But some supplements seem to calm them down, by improving mitochondrial functions when those go haywire.

Even excess histamine reactions can appear to be PN-like.

When nutrients like magnesium, Essential fatty acids, Vit C and others get low, then the cells cannot function to make energy and repair themselves.

Damaged peripheral nerves can repair themselves, but this takes time and effort by supplying the nutrients they need for this repair and by removing the trigger that is damaging them.
So one has to be a detective of sorts, and have a degree of patience. Each person is different, each has their own dietary habits (which might need changing) and also each has their own particular environmental insults which may be damaging the nerves.

There is a dramatic video out now on PD forum and MS, and I just moved it to PN : This illustrates dietary interventions.
http://www.wimp.com/mindingmitochondria/

This is my mitochondria thread...
http://neurotalk.psychcentral.com/thread80999.html
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Old 01-25-2012, 10:09 AM #4
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The way I got diagnosed with peripheral neuropathy was rather through the back door. I had complaints about elbow pain (both of them) and ankle pain (both of them). So my neurosurgeon says let's do a small procedure where I go in and take the pressure off those nerves that's bothering you. So, he goes it, and relieves the pressure off the nerves. Later he told me that he found that the nerves were being choked off by overgrowth of fascia, and thus I was diagnosed with peripheral neuropathy.

A neurologist, who I saw later and described some of my other weird symptoms to, like all my muscles easily spasming/cramping (esp. feet), not being able to sweat, my muscles seeming to not like any kind of fast, repetitive motion (was ok if I sloooowly repeated a muscle motion), diagnosed me with small fiber neuropathy.

So have been diagnosed with both. Unfortunately the two medications they give (gabapentin and lyrica) don't treat me well so I've opted to just live with the problems both conditions cause rather than taking those meds. and dealing with their nasty side effects.

Almost forgot: When I was looking into why I was so ill and had so many infections (which is what led up to my being diagnosed with Primary Immune Deficiency), I went to the Cleve. Clinic and saw a specialist who worked with mitochondrial problems. He ran extensive tests on me and said I was fine in that area.

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Old 01-25-2012, 11:06 AM #5
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More on mito testing:
http://www.mitoaction.org/blog/muscl...ndrial-disease

Keep in mind, genetic errors affecting mito functions are different than toxic damage, over time from drugs and other toxins in the environment. Mitochondria may regenerate in normal people with just damage from the environment if the trigger is removed and the elements for healing are present.

Obviously Dr. Wahl, helped herself, with her dietary changes.
Exactly whether it was remyelination itself, or help with restoring more normal mito functions, is unclear to me at this time. But it worked for her.
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Old 01-25-2012, 06:20 PM #6
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Your speaking of effects from drugs got me wondering...was on Cipro many, many times for serious infections before being diagnosed with Primary Immune Deficiency as it was the only antibiotic that would work. Was told recently by my podiatrist that both of my achilles tendons are torn and appear to have been for some time...connection

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Old 01-25-2012, 07:18 PM #7
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Idiopathic PN here, never told anything more specific such as small fiber.
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Old 01-25-2012, 08:12 PM #8
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Default Wow!

Some very interesting things are being brought to the surface!

Fiona, the Cipro might very well be a factor with the PN. I recall learning this on the PN forum. MrsD might correct me if I'm mixed up on this, but I'm certain that 'some' antibiotics cause PN.

I'm thinking that I am a true blue RSD case after getting more clarity on this thanks to our incredible MrsD
For one thing, RSD alot of times is due to some sort of injury. I've heard cases where even just a stubbed TOE can set it off! It might not even manifest where the actual injury occurred. I was kicked in the hand by a horse and had a very complex hand fracture/surgery. Shortly after, my knees began burning very badly and I blamed this on too much time on a treadmill (I think I got a bit over-ambitious because of the percocet I had to take ) Then it radiated outward (spread) to consume both legs. Now it's in my lower back (the burning). Ever since I had the SCS, I began getting horrible back spasms.
...........................and that HORSE wasn't even MINE!

MrsD mentioned RSD is a form of PN that affects only the sympathetic nerves......this would explain why I got such wonderful relief from the SNB injections. Only lasted 1 day, but oh I thought I was in Heaven - to be reminded what it felt like to feel 'normal' again.
Please correct me if I'm misinterpreting any of this. This is something I've ALWAYS been confused about and never could get straight answer from Drs. It never fails, Neurotalk always seems to come thru for us, moreso than our physicians! I'd venture to say that NT has the most comprehensive study on causes and aides of PN, than any other forum in the world (at least that's easy to comprehend) I've been on 'official' PN/RSD websites that may as well been written in Japanese.

This is all very facinating to me.

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Old 01-26-2012, 05:28 AM #9
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Quote:
Originally Posted by fionab View Post
Your speaking of effects from drugs got me wondering...was on Cipro many, many times for serious infections before being diagnosed with Primary Immune Deficiency as it was the only antibiotic that would work. Was told recently by my podiatrist that both of my achilles tendons are torn and appear to have been for some time...connection
Yes tendon ruptures and permanent PN are a result of Cipro and other fluoroquinolone treatments. As of now, there is no "cure" for this damage.

More information here:
http://neurotalk.psychcentral.com/post661103-2.html
It is believed that using steroids and/or NSAIDs with fluoroquinolone treatments make the risk for damage more likely.
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Old 01-26-2012, 07:08 AM #10
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Default I find--

--that the website of the neuromuscular conditions section of the Washingotn University at St. Louis medical website, which is an enormous database of neurological conditions, helps to explain the distinctions, including the more typical symptoms that would lead one to classify a certain cluster of symptoms as RSD/CRPS, including the injury prodrome and the trophic skin changes:

http://neuromuscular.wustl.edu/sensory-pain.html

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

http://neuromuscular.wustl.edu/sensory-pain.html#rsd
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