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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 05-03-2009, 09:14 AM   #1
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caz323 HB User
Help & clarification needed please!!

Hello all!

I'm a newbie here & really need some help from you guys because I'm totally confused!
Following an MRI scan on my knee, because I was in tremendous pain for seemingly no reason, the consultant advised me that I have "early arthritic changes" and "nerve damage" caused by a fracture of the fibula 2 years earlier. He then referred me back to my own doctor who has prescribed Amitryptilene for the "nerve pain" & anti-inflammatories for the "arthritic pain". The consultant, himself, wants to see me again in a year's time.
In the meantime, I requested a copy of the consultant's report from my surgery to support my claim for DLA & am both shocked & confused by this guy's letter to my doctor. He confirms the MRI scan etc & advises of the early arthritic changes in the knee but then states quite clearly that the so-called "nerve damage", as described to me at the time, is an "incidental finding of a REFLEX SYMPATHETIC DYSTROPHY" and that neither of the findings require any further treatment. Am I overreacting here - or should I be extremely concerned by this diagnosis??! I feel a sense of outrage that this man has completely trivialised what, alarmingly, appears to be a prevalent & serious disease. Quite frankly, I am doing my best not to panic about it but panic is getting the upperhand right now after having read so much about it. Apart from pain & immobility, I actually have a whole host of other symptoms, too numerous to mention in this first post, which I now believe to be directly attributable to this damn Reflex Sympathetic Dystrophy not least of which have had me wondering whether I could be in the early stages of alzheimers! And no, I'm not a hypochondriac but I do have many other symptoms. Any suggestions and advice from you guys out there will be greatly appreciated.
Many thanks in advance.

 
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Old 05-03-2009, 12:13 PM   #2
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Join Date: Feb 2009
Location: Pacific Northwest
Posts: 321
harmony85 HB User
Re: Help & clarification needed please!!

Well first of all I'm sorry to hear of your situation but can somewhat relate. A couple years ago when I first had my accident that gave me the rsd I had a doctor that wasn't very good and would not listen to what I had to say. I was getting ready for surgery and was suppose to return back to work. After the surgery instead of decreased pain and swelling the rsd made everything much much worse.This doctor refused to listen to me when I would describe what I was going through and didn't want to look any farther into my symptoms. Needless to say I got a second opinion. I dropped that "bad" doctor that was taking care of me and went with the second opinion. I would recommend you doing the same. It can't hurt anything. If you do get a second opinion I would bring in the doctors report and show him where it states rsd. Explain your symptoms and research that you have found. Ask the doc point blank,is this something I should be concerned about,if so what do you recommend.You must communicate not only your feelings but thoughts on the matter also. The most important thing right now is for you to get the ball rolling on proper health care and treatments. Rsd is not all that known between doctors and sometimes you have to be your own advocate. My heart goes out to you in your time of stress and frustration. This can be a difficult situation,especially if the medical field you're around doesn't know of or believe in what's really going on. Take it one day at a time. This kind of thing can take some time to get proper treatment. I know from personal experience that some times you have to have 4 or 5 even more doctors all working to come up with what's going on. Between the second opinion I had,the surgeon, the primary and etc it took me 3 doctors,1 surgeon and a physical therapist to all sit down together and talk about what has been going on,what all that each of them had seen before I got my concrete diagnosis. I wish you good luck and I hope that you get the care you need and soon. If you have any questions,don't hesitate to ask. There are quite a few people on this board that have not only been where you are but can understand the pain and frustration that you are going through.
Deanne

 
Old 05-03-2009, 06:18 PM   #3
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Join Date: Jan 2005
Location: FL
Posts: 686
Gaollan HB UserGaollan HB UserGaollan HB User
Re: Help & clarification needed please!!

Holy cow! You need to find a pain management doc and get some kind of treatment ASAP!! How long have you've had rsd? When did the symptoms first start? It sounds from what I read in your post as if it's been at least 2 years now.

To not tell you that you have rsd and then go on to say it requires no further treatment is beyond cruel. Early treatment is key! RSD causes many problems as it affects all of our body and every function, every part of our nervous system. You are NOT crazy nor thinking you are imagining things at all. I can say without you listing any other things that if you listed them for us, I could tell you every one is because of the rsd.

I hope this helps you. Please find a doctor as soon as you can.

Hugs,

Karen

 
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