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How were you diagnosed?

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Old 10-01-2008, 04:59 AM   #1
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cindi1965 HB User
How were you diagnosed?

I am going through the process of being diagnosed and went to the neurologist yesterday and they acted like I was making my pain up!! I am miserable and I have a hard time standing because of the burning pain in my leg. They would only give me a week off from work and gave me tegretol and prednisone for the burning and tingling in my leg. How hard was it to be diagnosed and did doctors treat you like you were a nut?

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Old 10-01-2008, 09:40 PM   #2
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Re: How were you diagnosed?

It's an all too familiar story for all of us. On average, someone with rsd goes to 4-5 docs before being diagnosed. I've seen some people go to as many as 10-15 docs! Many of them(docs) out there don't know what it is and others just refuse to believe it's real. Don't let this one doc get you down though. I would suggest finding a pain management doc who knows and treats rsd.

As to how I was diagnosed, from the physical findings and ruling out anything else. That's usually how it goes since there is no test that'll diagnose rsd. Docs will usually do a nerve block once you're dx'd (diagnosed) and sometimes will also have a bone scan done. That's a 50/50 thing though and doesn't really say whether you actually have rsd or not. A bone scan just shows if you have any bone changes that come with rsd. For some it happens early and fast and others it takes a long time if ever! A nerve block is done to,hopefully, make the pain go away and put the rsd into remission. If it's done too late it might not help at all. A big reason it's so important to get diagnosed early.

Feel free to ask any more questions!



Old 10-02-2008, 12:38 AM   #3
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Re: How were you diagnosed?

I felt awful when I read your story. No, you are not a nut. Please don't ever think that. Thought you might want to know my story. In July of 07 I had foot surgery. Instead of getting better, my pain became worse. I cannot do medical malpractice, but my surgery definitely had a very bad outcome. First of all, I had never heard of RSD. I went to UCLA to basically see why I was hurting so much, and he told me that I needed a 3-phase bone scan. It's very specialized and must be done in a hospital. It's a scan done over a few hours. Needless to say, my left foot (surgery foot) literally lit up like a Christmas tree and my right foot was totally invisible on the scan. I was diagnosed with RSD on September 2nd, (UCLA called me at 3:30 with the news) and I've never had a block. I am fortunate to have a doctor who is a RSD specialist. He is a rheumatologist who also treats patients who have RSD. I feel very lucky and very blessed to have him, especially after reading some of the horror stories. He participates in many of the conferences and I feel confident that I'm getting the proper care. I take Lyrica and Cymbalta, but first I was given Neurontin and Cymbalta. The neurontin wasn't managing my pain well enough so my doctor suggested that we try Lyrica. These meds can do a number on our memories, on our weight, on our thinking and our ability to concentrate, but they can prevent further damage to our bodies. I don't think we have a choice, especially because of our pain. He sent me to a neurologist and they found neuropathy in both of my legs. After many, many blood tests trying to find out why, I was part of the 30% of the "we don't know why" group. My feet can really hurt sometimes, and I'm not able to walk for exercise like I used to do, but all my effort and energy goes to doing my best to try and manage this very painful health condition. I very much wish that I could turn back time and not have RSD, but I've had to accept it and treat it. I work 3 hours a day and I'm really trying hard to be able to keep this job. I love it and I've been doing it almost 10 years. I don't have a pain management doctor. I know that many doctors think that because our skin isn't blue or reddish that we don't have RSD. That is not a deciding factor when diagnosing us. I'm not red or blue, and I hope I never become red or blue. By the time those colors are visible, there's some pretty serious RSD going on. And, everyone is so different with how they react to medications, etc. What works for 1 might be horrible for someone else. And, I hear it over and over and it's very true. Early diagnosis is critical to treating it and hoping for a possible remission. I saw my doctor very frequently in the beginning. But, right now I'm able to put 6 weeks in between the visits and that's the longest we've done so far. I also take an occasional Vicodin, or 1/2 Vicodin sometimes too.
I can't remember where you're at, but try and use a search engine on your computer for RSD specialists so that you can get the proper care. I feel so bad that they only gave you a week off. Try not to give up. We're all here with you to try and be your support and friend during difficult times. There are some wonderful and great people on this board. I wish you less painful days and please keep us posted, ok?
Take good care, Deb

Last edited by RoseinSanDiego; 10-02-2008 at 12:48 AM. Reason: the word google was replaced by asterisks when I read my message

Old 10-02-2008, 06:20 AM   #4
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Re: How were you diagnosed?

Hi Cindi, I did get treated as a nut job. At one time, I was diagnoised with being Manic Depressive of all things. I have seen a many of a doctor and nurse practioner for around 20 yrs and no one could never figure it out. I got treated for everything from Arthritis to Manic Depressive to being a hypochondriac before finally getting the correct diagnoises from my regular GP. It didn't take he long to realize what was wrong with me but by then I had lost permament use of my left arm and had lost most of the use of my right arm. I suffer from Cervical Dystonia as well as RSD which Cervical Dystonia is severe and uncontrollable muscle spasms of the neck.

My advice is if you don't think this doctor is right just keep searching to you find one who believes and wants to help you. I was diagnoise by the symptoms since there are no real tests to prove RSD. Also remember sometimes it may not be a specialists that catches it. Usually it's a doctor who happens to be familar with RSD. That was the case when I was diagnoise, my GP happen to be familar with RSD. I was sent to a neurologists to confirm his diagnoises but the neurologist he sent me to didn't think I had RSD. So just keep searching to you find someone who will listen to you because most doctors go by your symptoms.
RSD (Reflex Sympathetic Dystropy)
Cervical Dsytonia- severe muscle spasms in the neck

Last edited by rayefaye; 10-02-2008 at 06:21 AM.

Old 10-02-2008, 07:11 PM   #5
Join Date: Sep 2008
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cindi1965 HB User
Re: How were you diagnosed?

Thank you for your responses. I have a mild form of Cerebral Palsy and my pain started after a bout with MRSA. I decided to take a chance and see if my regular Neurologist could see me. My general practitionist thought that I could get better results with the university hospital because that would have more access to testing. Boy, was he wrong!! They were the ones who acted like I was nuts. So, I get in to see my neurologist this morning and she took one look at my leg(it was mottled and my toes were a little blue) and read my records throughly and she is almost positive it's RSD. I have all my testing next week, so in the meantime she put me on Lyrica, some pain meds and Lidocaine patches. I feel so much better knowing that someone is on my side and is trying to find the right solution for me. Thanks again~


Old 10-05-2008, 01:47 PM   #6
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walleye77 HB User
Re: How were you diagnosed?

I also was diagnosed with RSD a couple weeks after foot surgery. I had a nerve block but in my case the gal that did it hit the spinal fluid long story short, after eight days in the hopsital, one spinal tap and finally the blood patch to heel her mistake I still have the RSD pain. I really don;t know if the blocks work or not. Kinda of scare to try another one. I was put on Lyrica for pain and burning.I went to a neurologist and a foot specialist all said I have RSD. I take darvon for pain (a stress fracture) on the same foot. If you get a doctor that understands RSD you'll be much better off. I learned alot about RSd by googling it. Its not a pretty disease but caught early your chances are much better at remission. Best wishes. And you are not nuts!!! You are a person in pain.

Old 10-05-2008, 08:10 PM   #7
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Re: How were you diagnosed?

I'm sorry that you were treated like you were "nuts". I mean we feel bad enough because of the pain and if then you are told that "it's all in your heard", well that just makes everything worse.
Luckily my doctors did believe me. But I also had/have the coloring that comes with the RSD. And even now I still have my right foot and leg with the purple, reddish coloring along with the molting.
I now only see a specialist. She has treated many patients that have had RSD. Her exact title is physiatry doctor. They are experts in diagnosing and treating pain. They treat illnesses that effect the bones, nerves and muscles in our bodies.
I use to see her a lot but now I only see her about every eight weeks. She said that the damage done to me by the RSD and because it was not caught early enough is permanent. I take Lyrica, Cymbalta, and methadone for the pain. And even with taken all that medicine, my pain level is usually at a three. Which to me is wonderful. My doctor even told me in the beginning that her hope for me was to get my pain level to about a two or a three. But that I would never be totally pain free. I can live with it at three. At least now I am able to participate in my life a little bit more.

Old 10-07-2008, 10:33 PM   #8
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Re: How were you diagnosed?

I guess I am one of the lucky ones that was never considered a nut job lol. I actually have no idea how I got RSD in my leg. I woke up one day 8 years ago with pain in my knee and it continued to get worse so shortly after that I went to my primary doc. I figured it was arthiritis or something. My doc tried a cortizone shot in the knee and when I asked her after the injection, when it was supposed to start helping the pain, my doc looked at me and said maybe we should send you to a specialist. I said ok lol. I went to a orthepidic specialist and he did an MRI and poked and prodded and put me on crutches. This was now about 2 months from intial start of pain, I couldn't put any weight on my right leg now at all and the pain was now moving down the leg not just in the knee. Anyway, he suggested I had RSD and sent me to therapy and to a Pain Management Clinic. I have now been with the Pain clinic and the NP there ever since. I absolutely love her and would not even think of going to anyone else. She knows me inside and out and I love her to pieces lol.
We have tried every drug regemine you can think of, I have a severely sensitive stomache so I have a hard time with meds. I have done nerve blocks ...the longest one lasted for 6 hours. I gained 40 pounds in 2 months on nuerontin and it didn't even help me. We finally have settled on topamax, percocet and oxycontin. Oh and Flector patches. It helps a little ..enough so I can take care of my parents most days, some days not so much. I still say I am one of the lucky ones though because I can still get around on my own for the most part. Things are getting worse but we are expecting that and we are dealing with it. Thanks for listening and I am sorry for rambling.

Old 10-09-2008, 07:43 AM   #9
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Re: How were you diagnosed?

Originally Posted by cindi1965 View Post
I am going through the process of being diagnosed and went to the neurologist yesterday and they acted like I was making my pain up!! I am miserable and I have a hard time standing because of the burning pain in my leg. They would only give me a week off from work and gave me tegretol and prednisone for the burning and tingling in my leg. How hard was it to be diagnosed and did doctors treat you like you were a nut?
Hi, I had pain in my legs for over 5 years, strange discoloration of my legs swelling and pain like I have never felt before. It was so painful to touch, I had all sorts of tests and in the end I thought that everyone thought I was making things up. Eventually I went to a pain management specialist and I was diagnosed with CRPS (RSD) I was relieved but also upset knowing that this wasnt going to get better, since I was diagnosed last year unfortunately it has gone to both my feet and I am know having problems with my arms. I am at a loss as to how it can travel to different parts of the body. I know that it can jump or mimic the opposit limb but even this is confusing. I dont know where you are in the world but here in England it has only just been flagged as a medical illness and not many doctors know of the condition, in Amercia there seems to be much more research being done into the condition. I went to a Pain Management Programme, although this hasnt taken away the pain I met other people who had the same condition and some with didnt but also suffered chronic pain, this has helped me a great deal as we keep in touch and it is nice to be able to pick up the phone and say AHHHHHHHHHHHHHH Im having a bad day and the person on the end knows exactly how you feel.

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