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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Re: Update/ketamine
Dec 12, 2009

Sorry to hear that your doctor said that. Sometimes it amazes me that doctors can see the writing on the wall but say it can't be that because it's so rare. Well just because it's rare doesn't mean you are one of the unlucky people to get the rare disease. It is frustrating. So if it's not rsd,did he said what he thought it was,or just scratched his head and said um....i dono.
I guess I'm more rude than most people. I would have asked then why do I need the treatment,and if you don't think this is rsd then why did you say it probably was back then,and oh by the way can I see your documentation on how many people you have treated with this. Since you are a wishy washy doctor I'd like to know what kind of person I'm dealing with. I don't need someone who changes their mind every five minutes I need someone who is educated and can make actual decisions based on symptoms and what you've seen.
That's just me I guess. I've just spent so much time with people who either don't know what to say or have no clue at all. I'm pretty blunt when it comes to telling a doctor how stupid he/she is being but I can be because of the patient laws where I live.
My state doesn't put up with that kind of thing. I've noticed from talking with people all over the country that I live in one of the best places if you have a bad disease. You can get what ever doc you want,and if you don't like the look on their face you can pick someone else. It helps when you have a disease like rsd that nobody keeps up with when it comes to recent medical studies.
Sorry to ramble so much. I just get so angry when I hear of people who are being frustrated by the docs that should be putting them to ease.
I hope you are able to get some clear answers and well needed advice and help.
Take care and stay warm,
Re: Update/ketamine
Dec 15, 2009
Part of the problem with my situation is I started with a pain mgt. doc. in another city and he is who origiinally said about rsd and that my test results and symptoms together were "highly suggestive" of rsd. My insurance covered me seeing him but wouldn't cover him doing a major treatment. So I was referred to this doc in Cleveland. He didn't want to have anything to do with diagnosing the condition he just cares about covering up the symptoms to try to improve my quality of life while I'm still on this earth. I have an extremely complicated medical history which can be blamed for a lot of my symptoms as well so it is more complicated to diagnose me with things because they just blame it on the late effects of radiation/chemothereapy. My issue with that is I have had pain and problems from that for a number of years but about 1.5 years ago something changed and the pain became much more severe, sharper, more of a burning, etc. I have always had problems with swelling if I was doing much but I would lay down and get my knee up and use ice and the swelling would go donw, but the swelling with this wouldn't go down no matter what I did and was about 2-3 times as severe as "ususal".
I have been dealing with this crap from doctors for 23 years and you would think I would just get use to it but it continues to really frustrate me. I think "and I'm paying you how much money for thie?" I wish doctors had to have had a condition before they can be a specialist for that condition I think they would listen more to the patients and believe what they are saying is going on. For example, if my doctor had rsd himself I think he would be more willing to admit it was possible that I had it instead of blowing me off and just trying to cover up the symptoms.
Unfortuanately I've been to several different pain mgt. doc's and that is all any of them care about is covering up the symptoms instead of trying to find and treat the cause of them.

Re: Update/ketamine
Dec 16, 2009
I thought about a new doc but I am very limited as to whom I can see because of my insurance not to mention that means waiting even longer for any sort of treatment. At this point the doc is still recomending ketamin infusions for treatment which from what I have found sounds most hopeful in relieving RSD so I don't care as much if he won't admit I have RSD right now. I don't feel based on the info. I have found and my symptoms and how they started and have progressed that there is any question; I have RSD. I'm getting the "treatment", assuming insurance will approve it whether the doc calls it RSD or something else and at this point I care most about relieving some of the pain and maybe actually being able to sleep!
But yes it is still extreemely frustrating.
Everyone hang in there!!

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