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Posted 21 November 2012 - 03:27 PM
Posted 21 November 2012 - 05:29 PM
Posted 21 November 2012 - 05:44 PM
Posted 21 November 2012 - 10:57 PM
Posted 22 November 2012 - 01:06 AM
Posted 22 November 2012 - 11:16 AM
I appreciate your input and it pretty much sums up my feelings on the subject. think I'll keep on working at recovery and if a proven treatment comes along I'll go for it. Happy Thanksgiving!
Posted 22 November 2012 - 12:14 PM
I haven't done any research. But, I will read what is available.
Posted 22 November 2012 - 08:12 PM
Posted 22 November 2012 - 08:38 PM
Posted 23 November 2012 - 10:33 AM
thanks for the input. my stroke was a result of a carotid dissection(no known cause-no trauma). I was 39 and this was 12 years ago. the thought of this Enbrel being injected in or near the spine is enogh to keep me from trying it. if you don't mind me asking: what did you find in NY? thanks again!
Posted 23 November 2012 - 11:36 AM
Posted 23 November 2012 - 11:46 AM
wishing you and Dan all the best!
Posted 23 November 2012 - 09:42 PM
I always go back to the advice I got from survivors here. Dead is dead and it is not coming back. The current research is in defining the grey or maybe still functioning areas and what is being done to stimulate, define and enhance them. There are scans that can be done, but they are expensive, not paid for and must be done on a regular schedule to determine results. That is not going to be paid for in the near future. One can only hope they fall into a study group, are willing to accept the risks and have a positive outcome.
I look to Bruce's Intrathecal Baclofen - a tried and true therapy. Bruce's surgeon had never done one placed as high on Bruce's spine as the placement requested by the Physiatrist. And this is a young, hot shot Neuro out of Yale. If he had doubts, it was enough for me.
We investigate, look to the results and studies and then share here. Someone always has info and is willing to share. From there, we all have a wonderful base to make decisions from. The few dollars any of us have to spend, must be spent wisely and with some sort of positive outcome. None of us expect miracles, but any step forward is welcome. Debbie
Posted 24 November 2012 - 10:20 AM
this is great information! what are the "scans" you mentioned? also, what results were gained by the Baclofen pump? my neuro suggested one for my tone-but I wasn't sure about something so close to the spine and didn't want it to loosen me up too much. I get around pretty nicely the way I am-just always looking for improvement. thanks again for the words of wisdom!
Posted 24 November 2012 - 10:55 AM
Very, very true. We hear of miracle remedies here quite often. Sadly people spend a great deal of hope, time, and money futilely chasing them. If and when something is discovered and developed, it won't be a best kept secret we need to figure out. Could be why we're all familiar with names like Jonas Salk and Louis Pasteur. Until there's another scientist who's dedicated their life to a little more than 'Let's try this and see if we can sell it', our best bet is dedication and hard work which is our best bet proven path to results.
Sorry to be the killjoy, but if you hang around long enough, you'll watch people mortgage their homes to go halfway across the world for nothing.
It is what it is and there's no quick fix.
Posted 14 December 2012 - 05:59 PM
Posted 14 December 2012 - 08:04 PM
Posted 14 December 2012 - 11:18 PM
Posted 16 December 2012 - 08:26 PM
Dean, this study, like most are solely authored by Dr.Edward Tobinick, Dermatologist, Institute of Laser Medicine (hair removal) who also are the same staff and home of Institute of Neurological Recovery which also went under the name Institute for Neurological Research. Tobinick began making claims in 1998 for the off-label use of the then new rhumatoid arthritis drug Etanercept (Enbrel). Tobinick promoted the use of this drug for disc-related conditions such as chronic back pain. Tobinick created his own 'patented' administration of the drug and called it DiskCure with claims of relief within minutes. Tobinick advertised the treatment and charged patients thousands of dollars for this 'unique' treatment. Tobinick self autored studies to support these claims. A few years later Tobinick played the same trick, this time it was Alzheimer's, and after a number of years of causing havoc, Tobinick would appear to have prioritized his new target STROKE and Traumatic Brain Injury. A new patient can expect to pay around $4500 for an intitial consultation and 1st injection. Etanercept (Enbrel) carries a Remember a vial of Etanercept (Enbrel) costs about $230. Just because it is expensive, does not mean it works. These scams cost some money to run. In recent years I have observed Australians being targetted successfully by Tobinick with his scams be they for Alzheimer's or STROKE etc. Here are a list of chronic conditions which Tobinick claims to treat.
Traumatic Brain Injury
Recovery after Stroke
Primary Progressive Aphasia
Etanercept (Enbrel) carries a Boxed Warning
Challenging Tobinick's claims and practices feels like a gnat fighting on the back of an elephant, but maybe someday the past will catch up with Dr. Edward Lewis Tobinick, Dermatologist.
Posted 16 December 2012 - 10:28 PM
Posted 16 December 2012 - 11:11 PM
it's the infamous loopholes. Legally and technically Enbrel is approved by the FDA...but for other ailments. He's approved as a Doctor to prescribe and administer Enbrel. As long as he stays just this side of making illegal claims he's safe as there are many drugs used for "Off-label" treatments. One notable one comes to mind...Welbutrin was originally marketed for depression but doctors observed a strong tendency in Welbtrin to curb smoking and help some quit smoking completely. Still some people refused to try it because of the stigma against mental illness so though doctors could still use it for smoking cessation, they did further testing to prove smoking cessation efficacy and marketed it as Zyban simultaneously.
One that is approved for separate uses, one found accidentally, and where the name was not change, is one we're very familiar with---Gabapentin/Neurontin. It was originally marketed for Bipolar disorder but showed tremendous effects for people who suffer neurological pain--but at much different dosages. Tests were done to prove efficacy on neurological pain and was also approved for such but by the same name. Incidentally Neurontin is more effective against Neurologiac pain than it ever was in the treatment of Bipolar Disorder..
He's just toeing the line well,
Posted 17 December 2012 - 10:47 AM
Posted 17 December 2012 - 02:00 PM
now you cannot post anything on his Face-book page. I think they may be in trouble. found this in my research(read down to some of the comments-they don't even ask for medical history or make sure it's really a stroke):
Posted 17 December 2012 - 06:27 PM
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