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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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10-28-2009, 02:01 PM
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Elder
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I am so tired!!! I can't get my MD to give me a referal to a Pain Management doc or a Physical Med & Rehab doc or any other doc!!!
I am a new patient for my MD---have only seen him once and he knows NOTHING about RSD... he tried to brush it off as Fibro. While I don't disagree that I could have Fibro in ADDITION to RSD... Fibro is not my first concern... I have had RSD for 5+ years and was diagnosed and confirmed by 9 different doctors. How do I get to a doctor that knows about RSD and can help me?!?!? I'm on the edge of calling my insurance to find out if a referal is absolutely necessary. I need help... I am running out of meds and the pain is getting worse.  Thanks for letting me vent....  Abbie
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My avatar pic is my beautiful niece Ashley! . Rest in Peace 3/8/90 ~~ 4/2/12
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10-28-2009, 02:58 PM
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Hope the best for you. Let us know how it goes. loretta soft hugs 
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10-28-2009, 08:09 PM
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In Remembrance
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This is a Horrific situation that any of us can find ourselves in, even after years of satisfactory treatment. All I know is make those phone calls! Call your rsd support group, get in touch with rsdsa.org The support group leader should have some info. Go to a meeting. Use the rsdsa.org website to find a doc! I hate to recommend the YPages, or anyone who advertises "Pain Management". I would gather your records from whomever dx'd you, anything else that's important (what happened to your previous docs?) and take those to a new neuro, at a good hospital. Call a "good" local hospital, and ask for the chief of neurology, ask for whoever treats and is knowledgeable with rsd. There's Nothing wrong with auditioning the doctor before you spend your time and money. (Time is of the essence, but, it can also be a long term decision). Lot's of hospitals have 800 #'s that have a call taker who will put you in touch with people who take care of certain disorders, take certain insurance, like that. For instance, in Philadelphia, I was dx'd at Jefferson University Hospital. They have 1.800.JeffNow. Maybe you have something like that there? Open all the doors, converse with a friend and brainstorm, because when you get pushed against the wall, it can be very difficult to think. Just keep thinking, who else can you call? Look for the highest, best answers~! Also, there is nothing wrong with calling your insurance company, because they have your dx as rsd, and they know that the best doctors are the least expensive way to go, rather than pay someone to "Learn on you". No sense in being a doctor's test dumby, when there are docs who really know alot about this monster! I wish you the very best! Pete |
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10-28-2009, 08:37 PM
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10-29-2009, 01:42 PM
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Elder
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My doc office that I have been with for nearly 40years does not take my insurance --- Anthem Blue Cross/Blue Shield Lumenos. Very few docs around here take it....
I don't have the choice in switching insurances. I live in a somewhat rural area no big hospitals and not many specialists.The main doc that diagnosed RSD whom I saw for about 3 years (work comp doc) left abruptly and went into practice with a different medical group that does not accept my insurance. The Pain Management doc that I saw after being diagnosed DOES accept my insurance but I can't get a referral from the new MD (Family Practice) that I have only seen once. The Physical Medicine and Rehab doctor that I saw while on work comp also ACCEPTS my insurance but alas, I can not get a referral to him either. MD's office is not returning my calls... don't really want to make another appointment with him as he is clueless to RSD. Need to find a new MD that knows about RSD and takes my insurance. I'm very frustrated and ready to throw in the towel!!! I'll try my insurance company again tomorrow to see if I really need a referral as I can not find anything about it...only says to use In Network Physicians.... Thank you all for listening to me whine and vent!!  Abbie
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My avatar pic is my beautiful niece Ashley! . Rest in Peace 3/8/90 ~~ 4/2/12
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10-29-2009, 02:08 PM
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In Remembrance
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Abbie,
Your BC ins. should be able to direct you to an "in network" doctor who handles rsd (your condition). If not, they hafto pay for whoever you/they CAN find, even if they're out of network. I'd push them hard on this.. (My pocket card for BC/BS, is for that purpose.) Pete |
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10-29-2009, 02:15 PM
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Yes, Pete is correct!
Call the number in your BX card. They have a website & 24 hour help line. If u dont get satisfaction once, call again for another dept, supervisor, on call health emergency or psych emergency. They will call you back, trust me. Be the squeeky wheel. You have to be in control of ur own destiny & medical care. After 11 years of this pain, again trust me.
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Cyndy . color="Black">Slowly I turn, step by step, inch by inch *The 3 Stooges . |
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10-29-2009, 02:33 PM
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Abbie-
I agree with what has been said about calling your carrier, but offer one additional thought. Irony of ironies, it's been my across the board experience that the institutions that are the most liberal in accepting insurance from low-paying companies are major university hospitals, in which can be found (convieniently enough) some of the top CRPS practitioners in the country. Good luck! Mike Last edited by fmichael; 10-29-2009 at 06:15 PM. Reason: sp |
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10-29-2009, 06:50 PM
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Magnate
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You need a new primary care doctor. Not only does this bozo know nothing about your condition - he doesn't want to learn. Your calls aren't being returned because he really doesn't want you as a patient - you're too much bother.
I have the same problem with my GP. He told me flat out that my problem was too complex and it was taking up too much of his time. (He seems to have forgotten all the years and years I never bother him with as much as a sneeze.) Unfortunatley, like you, I live in a very rural area. As he's the only doctor for miles, we're stuck with each other. The one advantage I have is that he will refer me to get me out of his hair. Of course, we have public healthcare not an HMO, so referals are not money out of his pocket. I bet you and I have the same thing on the top of our Christmas wish list: A doctor who actually gives a damn. Take Care |
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| "Thanks for this!" says: | Abbie (10-29-2009) |
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