Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 08-19-2012, 11:57 PM #11
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Morgan
The coma's were banned in the states and germany after a number of people either stayed comatose or died. It is now only done in one hospital in Mexico don't know if I'm allowed to give you the name, on a trial basis. You have to pay $50,000 to get on the trial, $9280 doctors fees ad a few other fees as well.
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Old 08-22-2012, 05:07 PM #12
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I have been on it 2 year now and its done amazingly well. its cheapers and eaier then doing infusions all the time. It is covered by fda and insurances do pay for it. I also take lossanges which arent as helpful as the spray
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Old 08-22-2012, 10:17 PM #13
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Dear alaska - I am glad to hear it works for you. How many sprays do you do at a time that you have found to be effective? Have you had any serious adverse effects fron the nasal KET?
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Old 08-23-2012, 06:33 AM #14
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Yes I have found it very effective, I take 2 sprays each nostral but everyones dosing is different. As for bad a feects I havent had any other then maybe a runnign nose after the spray which isnt bad at all for so pain relief.
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Old 08-24-2012, 08:54 AM #15
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My daughter has been in 5 ketamine coma’s. Her MD just admits her to the hospital for pain control and starts giving her the ketamine. Just be forwarned, it doesn’t work for everyone, and it really messes with your brain. Ketamine is a “horse tranquilizer” and is/was used as a general anesthesia med. It disassociates your brain and wipes it clean, hopefully including the pain. But with neuropathic pain (CRPS) the brain is so hardwired to remember that it has a hard time forgetting that. Ketamine is NOT an antiinflammatory and does nothing for the inflammation process. It is strictly a mind altering drug, that is why it is so popular in the night clubs and referred to as “special K”.
My daughter has been effected with RSD in both of her legs hips to toes and been hospitalized 12 times in the last 18 months. We have learned a lot. It is so frustrating for these patients inflicted with RSD, my heart breaks. I hope there is someday a cure for all!!!!!
Please know we cannot continue to suffer in silence and the FDA needs to know that many different things work for different people. There is no one medication that works for everyone. I am a RN and work for a major insurance company I am working on getting insurance companies to look at individual cases and not pay attention to what the FDA says!!! We need to band together.
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Old 08-24-2012, 08:58 AM #16
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Are you sure it's coma and not infusions. The Comas last for 5 days where she is completely out and are banned in the US.
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Old 08-24-2012, 09:03 AM #17
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I am positive it is a Ketamine coma, she was on a ventilator. I have been a RN for 20+ years and the difference between infusion and coma has to do with dose and duration of medication. She has had the infusions also as an inpatient but the coma’s were high dose and mechanical ventilation. It is so scary having to watch that!!!
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Old 08-24-2012, 09:04 AM #18
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Keatmine is very addictive, are you finding this addiction with the intranasal medication? Is this something you get at a compounding pharmacy? or is it covered by your insurance company?
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Old 08-25-2012, 12:41 AM #19
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Done some more research found report from last year FDA does not allow induced comas of more than 2 days length, so that maybe is what your daughter is getting, the 5 day one, which has been claimed as a cure is only done at one hospital in the world. Can't find the link at the moment but it's in Monterry Mexico
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Old 08-26-2012, 02:22 PM #20
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Dear momorfrsd - The nasal ketamine is compounded; it is covered by my insurance. However, I had stopped taking it recently as I found it to be too cumbersome to use (too many sprays) and was unsure if it was effective for me. We have just orded sublingual ketamine.
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