I am so sorry. I'm way too familiar with Doctors that aren't willing to try "experimental" treatments. I just posted about a Dr. I'm supposed to see Friday, but this post makes me really remember not to get my hopes up. So sad it went down like that for you MM. Hugs!!

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Enna.
Too upset last night to really say thank you. I'm happy for you and anyone else that has been able to find a doc they feel good about. It gives me hope that people have found someone. I hope you are taking good care of yourself. Thanks again, mac

Hi Mama,

Hang in there and keep looking. The PM I chose is the third one I went to. I didn't get ketamine till a year from going to doctors asking "is this CRPS, what can we do?" You definitely have to keep pushing. Not that it is any way to have fun.

I was curious about the Prager referral...so they actually meant for you to go to California from Texas? There is that place in Dallas that does the ten day protocol. There are practices in Austin, Houston and San Anotnio that give it also on different schedules. Why send you so far?

Bio Based,
Thanks much for your reply. As if the illness is not frustrating enough, we have to add problems with access to doctors that are willing to treat the illness in a creative, individualized way. There are no drugs approved for this illness so anything that is done does not have solid research to back up efficacy. Nerve blocks are known to not be very effective, except for people diagnosed very early, yet they widely used and paid for by insurance. SCS units shown to be no more effective than ketamine infusions and are far more invasive yet they are being pushed like the only option. I've been to Southwestern Medical School, one of the supposed best PM doctors in Dallas and now this yo-yo in east Texas. Most of these people's worst nightmares seems to be an informed patient that knows there are other options. Excuse the rant.
No judgement on the LDN. Chopra states in his video that it can be purchased in India, with no script, at a low cost and it can. The problem is the mg. I'm glad you found someone qualified to help.
I've been in PT for months and it has helped. On Lyrica but not working well enough to justify the side effects. Last 2 docs have agreed on this. I'm taking magnesium as suggested by Chopra. Epsom salt OK but can tell much difference.
Thanks for the support and suggestions. I guess we just keep trying. Here's to a good tomorrow! ~mac

stillsmiling,

Thank you! Maybe your appointment Friday will go well. Agree with not getting hopes up too high though. Each of these appointments are only possibilities. I guess if we quit if we trying then we run out of possibilities and that doesn't sound so good either. I hope it goes well! Please let me know.

hi mama. i'm so sorry you are going through this. when i was first diagnosed with rsd i went through something similar. the things i have learned in the past four and and half year of living with rsd and dealing with drs is this:

1) learn to be your advocate. don't just do whatever the drs tell you to do. i'm not a dr and know i need drs to help me manage my rsd pain, but i have learned to get more then one opinion to confirm i had rsd and before making a decision on how to treat my rsd.
2) after i get several opinions, i research all the options out there and that were given to me on how to treat rsd and weight the pros and cons.
3) after i weigh the pros and cons and see what risks are involved i look the for the least invasive treatment to try first and make sure i am comfortable with that treatment.
4) i make sure to bring pamphlets about rsd and pass them out to all of my drs so if they don't know what it is, they can educate themselves on it and pass it on to other patients who have rsd so that they can educate themselves on it.
5) i never let any dr get away with telling me that rsd is all in my head. i kindly disagree, hand them a pamphlet, leave their office. then i cross them off the list of drs that i want treating me.
6) i never accept a dr trying to scare me into getting a procedure done that i don't feel comfortable with by for example telling me that if i don't do it by a certain deadline there will be no way to manage my pain.
7) i never let a dr tell me that should be treated the same as fibromyalgia. rsd has visible symptoms as well as widespread burning pain where fibro has no visible symptoms and widespread aching pain. though i have both, i know by reading and by experience that they are totally different and treated differently.
8) i always make sure i know the costs involved in procedures suggested because i was told that some procedures are very expensive and may be a motivator for some healthcare professionals to want to try them.
9) i never let any dr treat me like a lab rat. i am a person who has feelings and is very sick and want to be treated with respect and compassion. if this is not possible, i walk away.
10) i never stay with a dr who says that rsd doesn't spread especially with surgery when i know by reading and educating myself that is not true. i also know because i have had my rsd spread and it is very obvious. you just know when it happens.
11) if a dr asks me how i feel or that i look fine, i tell them that i feel like crap all the time because i am in constant pain from my rsd and that i may look fine because of all the meds i take to just be able to get out of bed, shower and make the trip to see that dr. i don't go back to drs who say things like this. they should know that with rsd you never feel good and looking fine doesn't mean you feel fine.
12) i always follow my gut. even if i am not a dr, there are some things i am wary of like the scs. some people swear by it saying it has helped them alot. some people say it didn't help and had too many complications like twisted leads and dead battery packs. i am not saying i will never try it, but it will definitely be a last resort for me. for now the pain meds and antianxiety meds i take along with a home exercise program doing mild stretches to try to keep my hand and wrist from completely atrophying work best for me.

i hope that whatever you decide mama, that you find a good dr who can provide some relief for your rsd pain soon.

Mama,
I followed Chopra on the LDN.

I bought the 50mg pills as he advised, put one in 50mgs of distilled water, put this in the refrig until the fillers separated. Shook the mixture. Put it back in the refrig to let the fillers settle again. Done. I started with a tiny dose and built up to 4.5mgs. There are YouTube videos showing how to do this. I may drop down a bit, because I have read that 4.5 is a good dose for those at 150lbs or above. I weigh less.

My mood is dramatically better. I no longer sob all day long.

Little Paw,
Sounds like third time was a charm for you. Maybe the fourth will be for me. I was ready to just quit trying to find a doc and just continue the PT on my own. Now I am reconsidering Ketamine. You seem to know of some resources in Dallas that I do not. I know of 1 clinic w/ a four day protocol and boosters as needed thereafter. It is mainly a headache clinic. The only other ones I know of are through Southwestern and 1 other psychiatrist, but those a for depression. Being new here I do not know the rules for discussing specific MD names or clinics, but I would sure like to know what you have found. Please share if you would in whatever way is appropriate.

OK the referral to Prager was given because my 2nd PM doc had heard of his research. He was very negative about Ketamine but said not to go to Florida and he did not think much of this doc in Dallas. I guess that's why he said Prager. This is the same PM that said Ketamine was a bottomless money pit. He said that it does not have good results and is very expensive. Expensive I agree with, but from what I have read the results are as good or better than a SCS. Do you know what the most respected efficacy stat is? I've heard 50% to 75%?

Anyway, thank you for your kind notes. You are a wealth of knowledge and so often seem to know just what to say to people to soothe and motivate. I don't know what your profession is, but I hope it's something that puts those talents to good use. Thanks again. mac

Thank you so much for the sweet comments! I was an allied professional in medical and psychiatric facilities for many years. I left the high stress to spend time with my son when he was younger and meant to go back before my foot disaster. One of these days....

Let's see what we can do to get you some resources. Here is a link to CRPS docs.
http://www.crpspartnersinpain.com/crps-physicians/
The ones who do ketamine will say so in their info. This is by no means comprehensive. My PM at Capitol Pain is not on here for Texas. Some practices don't really advertise that they give ketamine and you just have to call around.

I think we both mean the Dr. Krusz in Dallas but I probably had their protocol down wrong. I am thinking you mean UTSW on the other one. You might also try calling Baylor. Then there's these folks who say they give infusions for CRPS.
http://www.southwestpaingroup.com

Feel free to send me a PM anytime.
Sending hugs,

RSD ME,

I think that we just need to copy your post and give it as a guide to the newly diagnosed. Thanks for taking the time to write all of that down for me. So many good suggestions and words of wisdom. I need to develop your courage in dealing with these doctors. When I walked in and said I didn't want a scs and he said that is the only recommendation he had, I should have said thank you, BYE. Instead, I find myself trying to convince them that there are other options, almost begging. I begin to feel desperate and then just horrible.
I am so sorry we all have this illness, but I am so glad that I found all of you. Thank you. :hugs: