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Old 11-17-2009, 11:01 AM #81
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Lightbulb

This type of neuropathy is rather specific.

Here is an article about it:
http://brain.oxfordjournals.org/cgi/...full/123/4/710

Its conclusion is that given the side effects of treatments, it may be best to not treat this specific autoimmune issue.

You would have to discuss this with your doctor. Your benefits would have to be weighed against the risks of the therapies.

I would add fish oil to your B12 regimen, because fish oil has some anti-inflammatory actions, and has shown some benefits for myelin repair. It is easy to take, now there are enteric coated ones, and benefits for the rest of your body too.
I would also explore quality curcumin. This spice is showing reductions in inflammation of the brain, and blood vessels. It does not appear on the list linked to below. One needs enhanced absorbable curcumin, however, not just any old type.
So if you wish to try this new powerful anti-inflammatory, post back to me and I'll give you examples to buy.

This link is for multiple sclerosis, but since they have similar myelin attacks, suggestions may apply to you too.
http://www.msrc.co.uk/index.cfm?fuse...how&pageid=772
It is a longgggg list... and you may not need all of them.
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Old 11-24-2009, 12:44 PM #82
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Frown PM

I've read of so many types of neuropathies that I don't know where to start. All I know is that my PM is supposedly caused by WM (waldenstroms), a very rare type of cancer of the blood that has to do with too many IgM's in my blood. Hopefully, with successful treatment of the cancer, the PM is supposed to subside as well.

I do know this, when I take my vitamins like I'm supposed to, the "bad" days aren't nearly as bad as they had been. Specifically a B complex, plus B12 extra, among others.

Right now, as I type this, there are more mistakes than there are correct words. The PN has settled in my right hand more than the left, and I spend more time making corrections than I do anything else. Sheesh ! ! ! This is so frustrating. And, me with such limited patience to boot.

The first series of Rituxan treatments for the WM did hardly nothing. From 7,900 down to 7,100. The doctor put me on a regimen of steroids once a week for 4 weeks before again starting another regimen of Rituxan. Hopefully, this will help the Rituxan do its job.

Just venting~~~~~
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"Thanks for this!" says:
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Old 11-24-2009, 03:14 PM #83
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Quote:
Originally Posted by Gyrene View Post
I've read of so many types of neuropathies that I don't know where to start. All I know is that my PM is supposedly caused by WM (waldenstroms), a very rare type of cancer of the blood that has to do with too many IgM's in my blood. Hopefully, with successful treatment of the cancer, the PM is supposed to subside as well.

I do know this, when I take my vitamins like I'm supposed to, the "bad" days aren't nearly as bad as they had been. Specifically a B complex, plus B12 extra, among others.

Right now, as I type this, there are more mistakes than there are correct words. The PN has settled in my right hand more than the left, and I spend more time making corrections than I do anything else. Sheesh ! ! ! This is so frustrating. And, me with such limited patience to boot.

The first series of Rituxan treatments for the WM did hardly nothing. From 7,900 down to 7,100. The doctor put me on a regimen of steroids once a week for 4 weeks before again starting another regimen of Rituxan. Hopefully, this will help the Rituxan do its job.

Just venting~~~~~
Lasers also show promise.

Last edited by Chemar; 11-24-2009 at 09:53 PM. Reason: guidelines
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Old 11-24-2009, 03:16 PM #84
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Lasers also show promise.
Quote:
The intravenous laser blood irradiation
The intravenous laser blood irradiation was accomplished for the first time approximately 25 years ago in the former Soviet Union. Laser light was brought directly into the flowing blood through a one-way-catheter. By various in-vitro-tests before it could be verified that biological soft laser irradiation of white blood cells caused various positive effects, in particular expression of immunoglobulins, interferons and interleukins. After the introduction of the new method various clinical studies were published, showing additional effects on various metabolic pathways.
Improved sensitivity in patients with peripheral neuropathy: effects of
monochromatic infrared photo energy.
DeLellis SL, Carnegie DH, Burke TJ.
Gulf Coast Foot, Ankle and Wound Center, Tarpon Springs, FL, USA.
*edit*
Adv Skin Wound Care. 2004 Jul-Aug;17(6):295-300.


http://www.ehow.com/about_5036278_co...europathy.html

Last edited by Chemar; 11-24-2009 at 10:05 PM. Reason: copyright
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Old 11-24-2009, 03:54 PM #85
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Question

aeb105,
did you have this treatment?
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Last edited by mrsD; 11-24-2009 at 04:27 PM.
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Old 11-24-2009, 07:33 PM #86
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Quote:
Originally Posted by mrsD View Post
aeb105,
did you have this treatment?
No, I have not done the TENS Laser. But I have done the laser blood irradiation on my own. I purchased a couple of 650nm 1mw laser diodes, you can place them on an artery or stick them up your nose 20-60 minutes up to 3 times a week. I feel in perfect health after a session. The other more powerful caliber 850nm-935nm for neural healing is the stuff I am really interested in as well. I will be back later tonight and tell you more. I have seen many positive rat studies on damaged spinal nerves.

*edit*

added by Chemar
for more on this topic please see http://neurotalk.psychcentral.com/thread108998.html

Last edited by Chemar; 11-24-2009 at 10:11 PM. Reason: copyright. also broken links. redirecting to new thread
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Old 11-25-2009, 07:58 AM #87
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Default This bascially sounds--

--like the next step/enhancement of anodyne therapy:

http://www.anodynetherapy.ca/

http://www.anodynetherapy.net/
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Old 11-25-2009, 10:53 AM #88
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Try either 2-3 cloves raw garlic everyday(can crush and put in sandwich is good) or take Allibiotic with your other regimen. I think you need a solid antibacterial. I do this as well and my symptoms have improved big time.
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Old 11-25-2009, 11:10 AM #89
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Sorry that went to the wrong place. I was affirming what Liza said about taking an antibiotic of some sort. I feel the same way. I feel 5 times better now that I take this everyday. If you don't want to eat raw garlic, you can take Allibiotic(contains garlics's Allicin). Garlic by the way is nature's most powerful antibiotic and it leaves the good bacteria in your gut and doesn't cause Guillian Bar Syndrome, unlike pharma antibiotics.
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Old 12-01-2009, 10:55 AM #90
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Default What about balance?

Hi;

My balance is so far off, I can't stand up alone even for a few seconds. I use a walker to get around. Will that ever improve? I was told that I would only get worse. Also, I have drop foot in both feet and wear leg/foot braces which help some but don't really do the trick. Also do water aerobic 3 days per week.


Quote:
Originally Posted by flsun01 View Post
...relentlessly progressive , irreversable once established ,thats just a sampling of the prognosis of neuropathy found on most sites and unfortunantly in the mind of much of the medical profession. Little wonder that most newcomers to this forum are so traumatized by their symptoms and diagnosis. Thank goodness for the positive reporting from others on this site such as Wings and Liza. Yesterday marked my one year anniversary of this wretched disorder and I am much better. My pain has all but disappeared and my balance improved, for this I am delighted. I follow Mrs Ds regimen suggestion in the stickies faithfully. Does it help? I can only assume so , but I sure didnt get any suggestions from the Docs. And for the sake of any newcomers to this site looking for a glimmer of hope or a bit of advice concerning strange symptoms ,I shall list the following..piercing, crushing, unseen insects crawling, searing burning ,electrical shocks ,invisible rain drops , pins and needles and all around feeling lousy! So no ,you are not crazy ,and you can get better! Thanks to all....Tom
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