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    Old 10-14-2006, 11:39 PM   #1
    sealover
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    Question One doctor diagnosed me with RSD, but could he be wrong?

    I'm very confused...

    Only one doctor has said that I have RSD in my foot. He wanted to immediately treat me with a sympathetic nerve block, although it had already been almost 2-1/2 years since my injury. He never gave my foot a thorough examination and refused to look at photos I took of my foot. However, other doctors have stated that I probably do not have RSD. MRIs, X-rays, and bone scans are negative for signs of RSD. But the doctor who diagnosed me with RSD stated that symptoms of RSD wouldn't show up on tests until RSD has done more damage or is in later stages.

    I've read that some doctors intentionally diagnose patients with RSD even if they don't have it (for billing reasons?). Then again, some doctors simply may make the RSD diagnosis in error. This is almost just as bad as not diagnosing someone who actually has RSD.

    Please keep in mind that when I injured my foot, a doctor immediately injected it with cortisone which is known to cause atrophy of fat and muscles and weakening of tendons (I didn't know cortisone has side effects, but now I do ). The atrophy in the ball of my foot started about a month after one of the cortisone injections, and the atrophy has progressed.

    If the one doctor is correct that I have RSD, how come I am able to touch my foot without it causing pain...I can even rub my foot without pain? Rubbing my foot in the area of fat pad atrophy will cause more pain, but it's not pain that sends me throught the roof. I don't have any hypersensitivity now, although, when I first injured my foot, I had hypersensitivity for a very short time. I've read a lot on this board about people not being able to tolerate putting a shoe on or even the touch of a pant leg, nevermind rubbing their foot...but I don't have those particular symptoms. However, if ever someone stepped on my foot, I would probably faint.

    The symptoms I have are significant fat pad atrophy in the ball of my foot (with perhaps some muscle atrophy). My arch has dropped and my toes have splayed (noticeable when standing on foot). There is absolutely no swelling or skin changes (except for thinning of skin on the ball of my foot). But my forefoot turns purplish in the shower if I bear all my weight into it while I lift up my other leg to shave it...this color change only happens in the shower and only if I bear all my weight into that foot. I have awful bone pain due to the lack of fat padding on my foot, and I have some nerve and muscle pain. When I wake up in the morning, I have no pain whatsoever, but upon weight bearing, the pain starts up and gets progressively worse depending on how long I'm on my feet. I can't walk or stand for any long period of time. I can't wear any fashionable shoes. I still have pain wearing sneakers. But for the first year, my pain was bearable for most of the day--now things have gone downhill.

    I don't know what to think. I am so confused. Being told that I have RSD by one doctor and being told that I don't have RSD by other doctors....

    Thank you for any help as I am desperate for answers. I feel so depressed about all that I've lost because of my injury...I know I should try to look at the bright side, but it's not easy because I want to be able to walk on my feet forever like I used to without having stop what I'm doing due to the pain.

    You all are always in my thoughts and prayers. Ever since I discovered this message board and learned what RSD/CRPS is, I have been interested in offering support to those who have RSD and in learning more about RSD.

    Last edited by sealover; 10-14-2006 at 11:46 PM.

     
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    Old 10-15-2006, 04:44 PM   #2
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    Smile Re: One doctor diagnosed me with RSD, but could he be wrong?

    Hi,

    I know you've been coming here a long time looking for answers. I'm so sorry you still don't really have any.

    Did you ever go for the block? That might be able to help you figure out if you have RSD or not, although it might not help because if you don't respond to it, it doesn't necessarily mean you don't have RSD...you could still have RSD but not have sympathetically maintained pain. That's how I understand it anyway.

    Do you feel like these docs you've seen are good? I guess I'd keep going to docs until I got an answer I felt comfortable with. Do you feel like you have RSD based on what you know about it? The only thing in your symptoms list that makes me think you might have it is the color changes, but it's possible that that could happen with other problems too?? So confusing.

    I'm sorry. I was probably no help to you and I know how frustrating it is to not know what you're dealing with. I hope some of these "brainstormed" ideas help you somehow, but ??? Hang in there.

    Sharon

     
    Old 10-16-2006, 06:34 AM   #3
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    Re: One doctor diagnosed me with RSD, but could he be wrong?

    from what yopu have mentioned as far as symptoms,it really does not sound like typical RSD type symptoms but more like a neuropathic type of pain and possible atrophy caused by the nerve damage.just what kind of injury was done to your foot?do you have any sort of desensitization anywhere in that foot at all?

    the thing is atrophy can stem from many different conditions or reasons,but the nerves being damaged in some way is usually the trigger.you don't actually have to lose total sensation to actually have nerve damage and neuropathic pain,trust me on that one.what you have tho most definitely appears to be neuropathic in nature tho.what have your other docs had to say about this,what were their Dx of this?what other types of docs have you seen?sorry for the questions.i sure do hope you can find the right Dx soon,but i highly suspect that RSD may not be it.good luck and please let us know how things are going,K?take care,and hang in there,Marcia
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    Old 10-16-2006, 11:35 PM   #4
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    Re: One doctor diagnosed me with RSD, but could he be wrong?

    I have never heard of a doctor diagnosing RSD for billing reasons. Generally the in my experience, the opposite is true as it is a difficult thing to treat, patients are frustrated and need a lot of emotional support and there are often things like W/C and disability forms which no one wants to deal with if they don't have to. In addition, the fact you can touch yourself without pain is quite common, and I too can do that, but someone else's hand or clothes will cause burning and intense prickly feelings. My doctor explained the reasons to me but I forget the medical terminology. Can you get to a pool. Atrophy was setting into my legs because of the RSD and me using crutches and sitting in a lazyboy, but pool therapy enabled me to slowly increase the muscle which actually decreased the RSD pain (desensitized the area) In deep water you can move around more than you can on land and use a floation belt so you do not have to stand. If you can, give it a try. I also had nerve blocks after 3 years (took over two to get them to admit I had RSD) and it did not work but you may be different. What works for one does not work for another. Lyrica, Clonazepam, Gabapentin, elavil all in low doses have been a help too. Hope you find some answers soon. Laura.
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    Old 10-17-2006, 12:49 AM   #5
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    Re: One doctor diagnosed me with RSD, but could he be wrong?

    4 yrs ago when I got my knee injury my Dr that did my surgery's Dx me with RSD as did 4 other Dr's. The first time I went to my Primary Drthat I've been with now for the pass 2 1/2 yrs he told me I didn't have RSD, but because of how severe my pain was my lawyer insisted I go back for another appt for other test which showed that I had a different form of RDS.

    My RSD at the time was not the type with the skin discoloration or pain to the touch. Because of this my dr didn't believe I had RSD and told me "I shoud be glad I didn't have RSD" "I would rather have cancer than RSD" nice Dr huh?

    As the months passed I went through PT with major pain, plus pool PT which did not work at all..Jan 5 2005 WC sent me to a AME in Beverly Hills whom DX me with 100% RSD to my body. His report started I needed the series of 3 Lumbar Eupurial Block3 ASAP in order to pevent my conition from getting any worst.

    It's now Oct 17 2007 I'll go see my PMD tomorrow on the 18th. I never got that set of 3 series in order..only 2 I got approve finally for a new set now..don't know when Ill get them but I got them!!

    Anyway at this time I can or cannot touch my leg or foot/arms/face whatever is flaring up. My right leg/foot is the worst it now so badly discolored looks like someone took a batball to my foot and ankle and the back of my leg..I'm all purple and black and red!

    I have my good days where I want my feet in hot hot water or just cold to make the pain go away! I'm just about to the point of giving up my wheeler walker/w/seat for a wheel chair the fire in my feet is getting just too bad walking is so painful and driving is just as bad.

    RSD is a Mystersy and there's so many things that happen to me that throw me for a loop! Just the other day my left hand turned black for 8hrs then turned back to normal..I went to urgent care and the Dr assured me it was not a blood clot. Just another Mystery of RSD.

    Take Care and hope you find your answer but with RSD it won't be easy. Best of luck
    eunie

     
    Old 10-17-2006, 08:04 PM   #6
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    Re: One doctor diagnosed me with RSD, but could he be wrong?

    I'll try my best to answer your questions (this is a long post):

    Sharon,
    I never had a nerve block. A doctor told me that it is a little late to do a block, but the doctor who diagnosed RSD over 2 yrs after my injury wanted to do nerve blocks...I felt uncomfortable with him since he never compared my injured foot to my good foot and he never answered my questions about sympathetic nerve blocks, rather, he told me to go online to find info! It's a doctor's responsibility to provide info regarding pros and cons of a treatment such as a nerve block. Do I feel like the doctors I've seen are good? Well, I've been to some good docs and some crappy docs that just wanted to scoot me out of their office since my situation doesn't call for surgery, so they wouldn't be making any money off me. Regarding doctors knowledgeable in diagnosing RSD, I don't think any of the doctors I've been to know a tremendous amount of info about RSD. I wonder how much is taught in medical school about RSD to specialists like neurologists. Yes, there are docs out there who are very knowledgeable about diagnosing and treating RSD, but I don't know of any in my State. I'm not sure what the discoloration in my foot means (the discoloration is only in my forefoot), as it only occurs in the shower when I bear all my weight into that foot for more than a minute...does it mean that the blood is leaving my foot? It's scary. I appreciate you writing...of course you are of help to me! Any info and advice helps.

    Feelbad,
    The type of steroid that was injected into my foot is notorious for causing atrophy of fat, muscles, and who knows what else. When the doc injected it, it felt like he hit a nerve . The atrophy didn't start until about a month after a steroid injection in the area of the injection. I injured my foot when I accidentally hit the top side of it on a hard surface...no broken bones. I had an EMG test which was normal. I don't have any desensitization whatsoever or any other abnormal skin sensation except occasional burning in the area of atrophy...I haven't had any burning lately, though. Other doctors have diagnosed me with metatarsalgia (a general term to describe pain in the ball of foot, which can be caused by lack of a fat pad like I have), fat pad atrophy, neuropathy. What other docs have I seen? I've been to podiatrists, a neurologist, a physiatrist (he was TERRIBLE), a pain management doc, and orthopedic surgeons. I am now looking for a new doc, but I don't know which type of doc to go to. Thank you for taking the time to write me.

    Laura,
    I read on a website (I am not allowed to post the web address) that there have been actual cases in which some health care providers have used RSD as a diagnosis for reimbursement purposes even though the patient did not have RSD. This could be considered medical fraud. The reason why people can touch themselves without pain while the touch from others elicits pain is similar to why we can't effectively tickle ourselves yet others can cause a tickling sensation...I'm not sure what this phenomenon is called, but it's all in the brain. I'm not sure a pool would help my foot as I cannot tolerate standing on any type of hard surface due to the lack of fat pad in the ball of my foot (it feels like I'm walking on bones). But I have physical therapy exercises to do at home...the exercises lead to more pain, unfortunately. I am so sorry to learn that your RSD wasn't diagnosed until 2 years later and that the nerve block didn't work. It's good that your meds are helping.

    Eunie,
    How awful that a knee injury led to all that you're going through with RSD affecting other parts of your body. RSD is horrible. I wish that your docs had diagnosed your RSD immediately...it seems a lot of people are not properly diagnosed early on. Have you tried any alternative treatments such as a hyperbaric chamber? I'm not sure, but maybe a hyperbaric chamber can help with circulation problems if that is the cause of color changes...maybe someone here knows more about hyperbaric treatments than I do. I'm hoping you get your nerve block ASAP...it's possible you may need more nerve blocks in the future. Has your doc put you on neurontin or lyrica for nerve pain? I'd hate for you to end up depending on a wheelchair as it's important to try to be weight bearing as much as is tolerable...I know you are in a lot of pain and a wheelchair would help take pressure off your feet, but it's critical that somehow your foot gets some exercise to prevent atrophy. I hope your nerve block helps you, and I wish for your pain to go away.

    Last edited by sealover; 10-17-2006 at 08:32 PM.

     
    Old 10-18-2006, 04:55 AM   #7
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    Re: One doctor diagnosed me with RSD, but could he be wrong?

    Sealover, you might start looking for a doctor by looking the ones up that are writing all the medical opinions and books on the subject. That's how I found the one I have now. He seems to be untouchable by the WC folks, well insolated by interns and staff. The MCO has tried to see him both at my appointments and in the office and he just pays them no mind. Can't put any names in here for fear of being banned from this board, and I just found you guys, wanna stay around for awhile.

     
    Old 10-18-2006, 04:27 PM   #8
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    Smile Re: One doctor diagnosed me with RSD, but could he be wrong?

    Hi again,

    Have you seen a pain management doctor at all? In my experience, they seem to be one of the specialties that seem to know more about RSD. Obviously, that's a general statement and docs from all specialties can diagnose, but...you know what I mean . A PM doc deals with RSD a lot and may be your best bet to get a diagnosis one way or the other. Good luck and keep us posted on what you find out.

    Sharon

     
    Old 10-19-2006, 09:55 PM   #9
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    Re: One doctor diagnosed me with RSD, but could he be wrong?

    Hi Sharon,
    Yes, I have been to a PM doc one time. He immediately diagnosed me with RSD (although mri's, emg, bone scan, and x-rays don't show any evidence of RSD), and he recommended that he do a nerve block. He only looked at my bad foot and refused to have me take off my other shoe to compare bad foot to good foot. Doesn't that seem odd that he didn't want to see both feet, especially since bad foot looks relatively normal? I would think that to make a proper diagnosis, a doctor would want to compare good limb to bad limb. My bad foot looks just like my good foot except bad foot has fat pad atrophy in the ball of my foot and a couple of toes splay apart (near where steroids were injected) when I stand on my feet. No abnormal sensations or color changes are present. This PM doc refused to look at photos I took of the fat pad atrophy in my foot...he didn't want to know anything about the fat pad atrophy being attributable to the steroid injections that are known to come with risks of fat necrosis. All he seemed to care about was performing a nerve block on me. Plus, I found out at the time of this appointment that he is semi-retired and only works until noon. Ugh. He didn't have time to answer my questions. I'm not going back to him, and I do not trust his diagnosis due to all that I mentioned here. So I've been looking for a new doc. I'm a little frustrated with going to docs...I had one doc I'd been seeing for over a year write in my medical records that he examined my foot about 5 times, yet he only had me take off my shoe on 2 occasions! Anyhow, enough about me...I hope you are doing well.

    Hi Batman,
    How truly wonderful that you found a great doctor who isn't influenced by WC people! Great advice about looking for a doc who has written on the subject of RSD. I have actually been looking up a few docs who have published articles about conditions of the feet (my problem is in my foot), and all these docs are out of State (some docs are many States away from me) so I'd have to travel...I'll see what I can do, but my funds are limited.

     
    Old 10-20-2006, 09:23 AM   #10
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    Re: One doctor diagnosed me with RSD, but could he be wrong?

    Sealover. If you don't think you have RSD, have you been to a podiatrist yet?
    I was mainly a lurker on this list for about a year because some of my symptoms fit RSD I'd started having symptoms after a carpal tunnel release. I had desensitization , fluid something therapy ( finely ground corn cobs blown around in warm air inside a machine) as well as OT.
    About 8 months after surgery, I had bone scan, MRI and EMG....the autonomic tests showed temp changes consistent with RSD and I did have allodynia and paresthesia. The PM&R doc I saw that ordered the tests. He said I didn't have RSD....that the pain was in my head. He said he almost wished I'd had RSD, because they can treat that. I said I was glad I didn't have RSD, because it spreads. He said it doesn't spread. Wanted me to go to a pain management day program to learn to live with it.
    I ended up on Neurontin, but got off because of side effects. I'm on amitryptiline now. I had another surgery, where it was discovered the doc from first surgery had nicked the nerve. that doc said my hand will never be 100% because of nicked nerve. It is somwhat better now....I can touch paper and towels, which I couldn't before. And my hand still loves warm water and hates cold. I don't have the burning pain all the time...just when hand is tired.
    I'd read on another forum, that it takes people with RSD,an average seeeing 14 doctors before they get diagnosis of RSD. SAD. And I've read where, if it doesn't seem like RSD at first, in some people their symptoms do get worse and they have full blown RSD as tame the flame describes.
    Sharon, I get discoloration in my hands and feet when in the bath...I think it has something to do with not enough oxygen getting to the tissues for some reason. No pain with it.
    Anyway, Sealover, it may take seeing a few more docs( and not necessarily, PM docs) before you get help with whatever condition you do have.

     
    Old 10-20-2006, 05:18 PM   #11
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    Smile Re: One doctor diagnosed me with RSD, but could he be wrong?

    Hi,

    I'm with you that it seems weird that the PM doc you saw didn't want to compare the good foot to the bad, but what do I know ? It does seem odd though. I know it must be so frustrating for you, but try to get up enough umph to go to another PM doc. Maybe this one will be THE one for you to figure out what's going on.

    Sharon

     
    Old 10-20-2006, 10:55 PM   #12
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    Re: One doctor diagnosed me with RSD, but could he be wrong?

    Taimse,
    I've been to about four podiatrists in the past few years as well as other specialists. There's nothing that can be done for fat pad atrophy or weakening of tendons in my foot, unfortunately, except to wear comfortable shoes and good insoles or orthotics. The damage has been done by steroid injections for the most part. Anyway, that just stinks that a doc told you your pain is in your head. When you hear a doc telling you your pain is in your head, you don't walk, you run out of that doc's office! Your pain was NOT in your head, and you found out that a nerve was nicked...a nicked nerve can definitely cause problems. Although your hand will not be 100%, thank goodness that your hand has improved. You said you have discoloration to your hands and feet in the bath...I think you are right about not enough oxygen not reaching the tissues, but I don't understand what makes this happen. Some things are confusing.

    Sharon,
    I appreciate you writing back. Definitely, it's odd for a doc to not compare my two feet and then to make a diagnosis of RSD when the foot he looked at had normal color and normal function and no abnormal sensation. He told me that he bets that if I went home and measured my calves, that my calf on leg of bad foot would be smaller than the calf of good foot. He was supposed to be doing a thorough evaluation, so if he was interested in finding out if one calf was smaller than the other, he should have taken a measurement right then and there. How does he know for certain that I will be able to take accurate measurements on my own? Well, I went home and measured my calves carefully, and both calves measured the same. My mom was with me at that appointment, and she was extremely disappointed, and she agreed that the doc didn't do a decent examination of my foot, so how could he even state that I have RSD. I'll be making an appointment with a new doc soon. My family doc told me that he doesn't want me doctor shopping!?! (gee, I haven't been to a new doc in quite a while)...he doesn't understand that sometimes you don't know until you go to an appointment with a doc if that doc can be of any help. If the doc can't help, you have to find a different doc.

     
    Old 10-21-2006, 07:07 AM   #13
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    Re: One doctor diagnosed me with RSD, but could he be wrong?

    Hi Everyone:
    I am so confused as well. I was diagnosed, (Well, somewhat) a few months ago by my pain management Doctor, who in turn, referred me to a neurosurgeon. The Neuro Doc did a thorough examination of my Rt Foot, as I was having a flare up at that time. My foot takes on a waxy appearance as does my ankle, and half of my calf. The pain of course, is terrible. Just putting my feet on the floor in the morning can be a real challange. This is all a result of an injury sustained last year at work, herniating 5 discs, both thoracic and lumbar. Of course, the foot and the pain have become my major issues at this point. I also suffer from intermittent numbness so severe, that back in January, my Left Leg went completely numb, while sitting, and when I attempted to stand, hoping to faciliate circulation, my foot buckled underneath me, and I did fracture it. I was casted for a three month period of time. After reading some of your posts, I must say, I really have no idea what I am in store for. NONE. Last week, I went back to my pain management Doc, and he examined my foot, and told me I need a series of tests to finally diagnose the RSD. I explained to him that the neuro Doc had ordered new MRI's, and the W/C insurance Co. denied the approval. The PM Doc told me that he can "get around" the W/C and get approval, so that is where I stand right now. I do not know which end is up. I have no idea what tests he would order, as I realize that there is no one conclusive test for RSD. Can someone please tell me what I am in store for, in terms of getting a conclusive diagnosis from tests? I would greatly appreciate it. I will be going back to the Doc next week, so I really need to know what to expect. Oh, and I just wanted to say, that I noticed that more than a few of you, have made reference to your foot changing color while showering or bathing. That is exactly what happens to me, and, I am so afraid of fracturing another bone, that I bring the phone in the bathroom with me, just in case. That is when my numbness gets the worst. Strange, huh? Any information that anyone can pass along, would be greatly appreciated. Thank You.
    Diedre

     
    Old 10-21-2006, 03:55 PM   #14
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    Smile Re: One doctor diagnosed me with RSD, but could he be wrong?

    Hi Diedre,

    Welcome to the board. I see you live in NY. I do too, but on Long Island.

    I've had RSD for 20 years so things may have changed a bit since my diagnosed (but not enough), but they diagnosed me with results of a bone scan and my X-rays showed osteoporosis which is a sign of RSD. I think that was all the tests done at that time although since then, I've had a phentolamine test which they sometimes do to see if you have sympathetically maintained pain (SMP) or sympathetic-independent pain (SIP). You can have RSD, but not respond to that test because your pain may not be sympathetically maintained anymore. Also, my docs diagnosis was also done based on outward signs that I had like atrophy, skin temp and color changes.

    I hope this helps a bit. I know it's very overwhelming so if you have any more questions, feel free to ask. There are many great, knowledgeable people who post here who are only too happy to help people out. Take care.

    Sharon

     
    Old 10-21-2006, 08:49 PM   #15
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    Re: One doctor diagnosed me with RSD, but could he be wrong?

    Hi Sharon:
    Thank You for taking the time to answer some of my questions. Honestly, I have more questions than I think there are answers with this problem. I have decided to become as pro active as I can be at this point, and read, research and ******** all of the information that I can absorb or process at a sitting. I realize now that there are three different stages to RSD, I now know specifically what tests are used to determine whether or not a patient has RSD, or, as it is now referred to, CRPS. You see? It seems the medical community cannot even agree on a title for this disease/syndrome. LOL But, I do believe, that since my PM Doctor, is also a spinal cord specialist, and a surgeon, he was on top of the situation long before he even mentioned RSD to me. He put me on Lyrica, months ago, to help with the back pain I was experiencing from the injury to my spine. I really do believe that he bought me some time with this medication, and I feel that if I am assertive, and demand that the tests be done as soon as possible, and depending upon the outcome of the tests, and the Doctor's opinions, I will then begin appropriate treatment, including medications sooner, rather than later. I am ready to hire an attorney that specializes in RSD, or CRPS, in order to provide me with the optimum amount of attention that is needed for me to prevent this disease from progressing with even more aggressiveness, than it has. But, the more I seem to read and find out, the more confusing it can be. The only thing I am clear about, is what I hear said, on this board, by you good people. You are the only ones that I trust, and the only people that help me to hang on to my sanity some days. So, I want to Thank all of you for contributing to this board, and helping me, as well as so many others, by taking the time to answer questions for all of us that are muddeling through this diagnosis.
    Diedre

     
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    How do I convince my family doctor? djh358 Addison's Disease 0 09-19-2004 02:05 PM




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