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Old 01-10-2008, 03:22 PM   #1
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paulo60 HB Userpaulo60 HB User
Anyone have news about the efficacy of nerve growth factor?

I have an inherited sensory motor neuroaxonal neuropathy of long standing. It is getting closer to the disabling stage, with significant architectural changes in the feet requiring orthotics, and atrophy of tendons and muscles in the legs. I have literally exhausted all conventional treatments, neurontin, lyric - cymbalta, etc., and am now grasping at straws and/or miracles. I have heard of the use of nerve growth factor in certain spinal cord injuries, but have not heard of it being used much to treat my kind of neuropathy. If anyone has any additional information, I would love to hear about it. Thanks...Paulo

 
Old 01-19-2008, 09:01 AM   #2
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Re: Anyone have news about the efficacy of nerve growth factor?

I was in a clinical trial on a nerve growth factor to be used as a pain medication and it attached to some previous nerve damage from a herniated disc and it caused me to have neuropathy from the neck down. I know this was a one in a million case, but my life has been ruined from it. I was perfectly healthy when I joined the study and now I am permanently disabled. Please don't do it!

 
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Old 01-19-2008, 10:53 AM   #3
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paulo60 HB Userpaulo60 HB User
Re: Anyone have news about the efficacy of nerve growth factor?

Quote:
Originally Posted by labrat2005 View Post
I was in a clinical trial on a nerve growth factor to be used as a pain medication and it attached to some previous nerve damage from a herniated disc and it caused me to have neuropathy from the neck down. I know this was a one in a million case, but my life has been ruined from it. I was perfectly healthy when I joined the study and now I am permanently disabled. Please don't do it!
Dear Labrat,
That is the worst news I have heard in quite some time. How horribly unfortunate. I have to ask this: since you were perfectly healthy, why did you enroll in the trial? Were you having pain from the herniated disc? What part of the spine was your disc herniated, and what does your neurologist think will be the long term outcome for this neuropathy? I hope that doesn't sound too clinical, I am truly sorry to hear of your problem[s]. Sometimes when there is a known cause for neuropathy and the causal agent is removed the neuropathy is reversible. Has your neurologist held out any hope for you in this regard? Your case sounds tragic. Is there any way you can pursue compensation for this disabling injury you have suffered? Lastly, what are you trying now in respect to treatment? Thank you for posting your warning. Since I have an unknown inherited type there is nothing that can treat it, outside of pain meds for the nerve pain that is my most faithful companion. Is your story posted somewhere else on this site? Sorry for all the questions. It is hard to wrap my mind around the implications of what you said, i.e., "neuropathy from the neck down", or even begin to comprehend what you must be going through Paulo

 
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