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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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06-01-2014, 05:59 PM | #11 | ||
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Thanks for the info and glad you were a good advocate for yourself. Is it helping you feel better right now? I hope so. Yeah I see very very few docs and if I bring up anything Ketamine they freak. Even PM docs. It's like it is the devil...but persistence is helpful, I give up too easily with docs since I have had this so long, I expect very little, and get that, LMAO
Feel better and tx. Yeah if you don't mind PM me sometime with docs name or number that would be great. I am not in NJ or NY but am on East Coast. Can't imagine working with docs that fight for you, in a good way, lol. It has been difficult at best ...but I have a PM I like, they are just so conservative. ULTRA. thanks so much Quote:
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"Thanks for this!" says: | eevo61 (07-20-2014) |
06-01-2014, 09:25 PM | #12 | ||
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Can anyone help me understand what symtoms improve with nasal ketamine treatment? Thanks, Lottie
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1999 Chronic spine pain related to Degenerative Disc Disease, Sept 2001. C6 / C7 discectomy & fusion. Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement. July 2011 removal of broken . Artificial Disc Replacement. Woke up in recovery room with RSD Monster.: . Aug 2011 Stabilization of spine at L3/L4/L5. October 2014 Rheumatoid Arthritis. |
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06-06-2014, 10:58 PM | #13 | ||
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Quote:
Samantha |
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06-07-2014, 11:16 AM | #14 | ||
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For me it reliefs my pain ,and also helps with my anxiety I have.but for me the biggest thing it does is knocks down my inflammation in my face ,stomache ,limbs exc..helps me digest my food better.i have major stomache issues.best of luck Danny
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06-07-2014, 11:46 PM | #15 | |||
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Thank you for responding alaska49 and 89danboy! So glad that someone responded to Lottie's question. I have been waiting. So there is relief to the muscle and joint pain then?
The compound Ketamine creams would/should help with muscle and joint pain also right? I am adjusting a med right now that should take about a month to level out. Once that is done my doc has said he will give me the compound. I could tell he didn't know anything about the nasal spray when I mentioned it. I would love to hear more feedback on results from those who use it! Also, is it expensive? Thanks in advance!
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004 Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else. Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb, |
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"Thanks for this!" says: | eevo61 (07-20-2014) |
06-08-2014, 10:17 PM | #16 | ||
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Free, I've used the ketamine compounded cream and didn't get improvement. Now! I do have to admit that I did not use it daily because its messy and got on my clothes, furniture and seat of my car (applied it to my calf). Maybe I should try it again and ask for it in a less messy formulation.~lottie
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1999 Chronic spine pain related to Degenerative Disc Disease, Sept 2001. C6 / C7 discectomy & fusion. Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement. July 2011 removal of broken . Artificial Disc Replacement. Woke up in recovery room with RSD Monster.: . Aug 2011 Stabilization of spine at L3/L4/L5. October 2014 Rheumatoid Arthritis. Last edited by Lottie; 06-08-2014 at 10:18 PM. Reason: Free should read as "Vrae" |
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"Thanks for this!" says: | eevo61 (07-20-2014) |
06-09-2014, 08:12 PM | #17 | ||
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I've just gotten the spray after a year of paying (an unholy amount of $) cash for infusions. Spray is unbelievable. Wonderful. As much of an impact as the infusions. I hope I can back off the infusions a bit, without losing progress made, only because of the cost. I'm still pretty severely impaired, but, managing a bit better. Only reason I was able to get infusions, only reason I was able to get the spray: self - advocating!!
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06-09-2014, 09:36 PM | #18 | ||
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Quote:
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06-10-2014, 10:21 PM | #19 | ||
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Seriously- that's terrific, good for you!! Can you share your self advocacy tips? Any suggestions on how to convince the doctor and the insurance company? Thanks in advance for any tips you are comfortable sharing. Wishing you continued improvement ~ Lottie
__________________
1999 Chronic spine pain related to Degenerative Disc Disease, Sept 2001. C6 / C7 discectomy & fusion. Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement. July 2011 removal of broken . Artificial Disc Replacement. Woke up in recovery room with RSD Monster.: . Aug 2011 Stabilization of spine at L3/L4/L5. October 2014 Rheumatoid Arthritis. |
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"Thanks for this!" says: | eevo61 (07-20-2014) |
07-17-2014, 09:00 AM | #20 | ||
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I live in Indiana, a super conservative state, and I have been super active in trying to advocate for myself for ketamine spray. My doctors practically laugh me out of the room every time. They actually have said to me and mother (who I bring to my appointments bc she is an RN) that it is ridiculous to suggest treating me with a "street drug". This is after we have showed them peer-reviewed journal articles and basically done their work for them. They do the same thing with any sort of progressive medicine, even if it isn't pain medicine related. They know very little about CRPS. It is very frightening that they are responsible for my healthcare. The only way I am going to get adequate care is to go out of state and I just don't have the money to do that right now. Luckily, I won't have to travel far once I have saved up the money. There are a cluster of forward-thinking doctors in Chicago, or at least I have heard.
I am pleased to hear about your good results! It gives me hopes for when I finally can get my CRPS treated properly! |
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"Thanks for this!" says: | eevo61 (07-20-2014) |
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