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Old 10-29-2010, 04:10 PM #11
kokorogrl kokorogrl is offline
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Quote:
Originally Posted by Rrae View Post
Here is the link to the SCS/Pain Pump Forum here at NT
(it is listed as a sub-forum under the "Medications/Treatments" forurm)



It is very active and full of information and people's experiences.
The 'stickies' at the top contain FAQ's and some very impressive links to sites that explain these units very well.

I've had mine for 9 months and it takes away about 75% of the horrible burning neuropathy in both legs

Caring
Rae
Thank you very much for this information!
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Old 10-29-2010, 04:12 PM #12
kokorogrl kokorogrl is offline
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Originally Posted by Hermes View Post
A friend of my father had it for PN in hist legs. I talked to him and he was feeling great as it worked well. I was looking into it but it doesn't work for non-length dependent neuropathy.
Oh, okay, thank you.
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Old 10-29-2010, 04:16 PM #13
kokorogrl kokorogrl is offline
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Originally Posted by godiva3ft View Post
I went to physical therapy for some time and my doctor -- a physical medicine specialist -- finally ordered a Neuro-Muscular Electrical Stimulation (NMES) unit for home use. It works to re-educate the muscles and make new connections between brain and body parts. If it's not possible to make new connections due to extensive lesions, then it keeps your muscles toned. It does help with pain as well.

I have recently had a reversal of long-standing numbness in my feet and connect that to taking Olive Leaf Extract. At first, it sounded silly to me but some of the information on this supplement is amazing. I would guess your response would depend on the level of your disease activity and progression.

Olive Leaf Extract has improved MS-like symptoms (EAE) in mice according to an article entitled: "Dry olive leaf extract ameliorates experimental autoimmune encephalomyelitis" I was unable to post the link since I haven't been on the forums long enough.

Another great article describing the many benefits of OLE is on Wikipedia.
I had written a post to you but not sure if it will go through or not because the system timed out on me before it posted. I just wanted to thank you for the Olive Leaf Extract suggestion because I had never heard of that before. I am going to give it a try. Thanks.
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Old 05-13-2014, 06:21 PM #14
freenla freenla is offline
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Quote:
Originally Posted by kokorogrl View Post
I've had PN for over a year now. Done all the testing and we can not find the cause. Tried the medications and for one reason or another they weren't good for me. Topamax did help a little bit and I liked it but after about 6 months my hair started to fall out so we had to dc it.

I finally got in to see a pain specialist yesterday who wants to try me on a Medtronic Neurostimulator. I've done some research on it and can't seem to find people using it for PN. Has anyone here heard of it being used for that? Has anyone tried it?

Thanks, Koko
Has not worked for me. Put in in October 2013
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