Re: question for all &Ro

[Guest guest]

Thank you so much Rick, I really appreciate hearing how everyone is being treated for the NS. Prednisone is one of those Love/Hate relationships for me, I too am on Lyrica which I found reduced my pain by 80% at least, the methotrexate was a big helper for me until recently. Again Thank you, this means so much to me to have everyone share there experience, you are so wonderful, I am blessed and wish blessings on you, Marla

Hi, I have had NeuroSarc for a year. My initial symptoms were double vision, a strong band-like pain around my abdomen, lower back pain, numbness to my hands (wrists down) to the point I could not write or type, and pain in my legs making it very difficult to walk without a walker.

Since then I was on Prednisone for 8 months, my vision problem cleared up a month. As I was weened off steroids was given Neurontin. That helped my hands function, and my walking improved. Still no improvement with the band-like pains. I was put on Methotrexate (still on it) and can't say if that has really done anything. My Neurontin was switched to Lyrica, no changes there as well. Some of my Dr's wanted me to use Remicade, but I held off because I hate IV's . My Neurologist insisted on a lumbar puncture to look for protein in my spinal fluid (it was detected when I was originally diagnosed in the hospital). My fluid was protein free, so he

felt Remicade would be a waste of time and put me on Cymbalta which has reduced most of the remaining pain. I am back at work and compared to a year ago almost all my symptoms are gone, the only exception is lower back pain in the morning especially on cold humid days. Another downside is I'm very tired most of the time and require naps and plenty of sleep. My Dr says it's because of the meds.

Get several opinions before starting Remicade. I have been on a waiting list for months to see a N.S. specialist, I see him in two weeks and will let everyone know his opinions on treatment. It seems everyone has special needs.

hope you resolve your problems and feel better. Rick Marla Bramer wrote:

I was wondering if there is anyone with neuroSarc, and what medications are you taking and are they helping, Ron, I know you are in a wheelchair, did you try anything like Remicade to try and stop the progression of the sarc?

Anyone else that has Neuro Sarc and has is on or has been on something that has at least stop the progression of the neuro symptoms. I beginning to think that maybe Remicade is not my answer, and that I should try another drug, any suggestions, I read someone was on Imuran and when the dose was decreased she got burning again, and I just read that and still I forgot who said it. I just wonder if maybe I'm going down the wrong road, and

need to be looking into something else???? Thank you for your time I so appreciate all of you so much, Blessings to all, Marla --

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

Thank you so much Rick, I really appreciate hearing how everyone is being treated for the NS. Prednisone is one of those Love/Hate relationships for me, I too am on Lyrica which I found reduced my pain by 80% at least, the methotrexate was a big helper for me until recently. Again Thank you, this means so much to me to have everyone share there experience, you are so wonderful, I am blessed and wish blessings on you, Marla

Hi, I have had NeuroSarc for a year. My initial symptoms were double vision, a strong band-like pain around my abdomen, lower back pain, numbness to my hands (wrists down) to the point I could not write or type, and pain in my legs making it very difficult to walk without a walker.

Since then I was on Prednisone for 8 months, my vision problem cleared up a month. As I was weened off steroids was given Neurontin. That helped my hands function, and my walking improved. Still no improvement with the band-like pains. I was put on Methotrexate (still on it) and can't say if that has really done anything. My Neurontin was switched to Lyrica, no changes there as well. Some of my Dr's wanted me to use Remicade, but I held off because I hate IV's . My Neurologist insisted on a lumbar puncture to look for protein in my spinal fluid (it was detected when I was originally diagnosed in the hospital). My fluid was protein free, so he

felt Remicade would be a waste of time and put me on Cymbalta which has reduced most of the remaining pain. I am back at work and compared to a year ago almost all my symptoms are gone, the only exception is lower back pain in the morning especially on cold humid days. Another downside is I'm very tired most of the time and require naps and plenty of sleep. My Dr says it's because of the meds.

Get several opinions before starting Remicade. I have been on a waiting list for months to see a N.S. specialist, I see him in two weeks and will let everyone know his opinions on treatment. It seems everyone has special needs.

hope you resolve your problems and feel better. Rick Marla Bramer wrote:

I was wondering if there is anyone with neuroSarc, and what medications are you taking and are they helping, Ron, I know you are in a wheelchair, did you try anything like Remicade to try and stop the progression of the sarc?

Anyone else that has Neuro Sarc and has is on or has been on something that has at least stop the progression of the neuro symptoms. I beginning to think that maybe Remicade is not my answer, and that I should try another drug, any suggestions, I read someone was on Imuran and when the dose was decreased she got burning again, and I just read that and still I forgot who said it. I just wonder if maybe I'm going down the wrong road, and

need to be looking into something else???? Thank you for your time I so appreciate all of you so much, Blessings to all, Marla --

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer