How many out there have been diagnosed with RSD and then down the road had another doc state no its not!???? I am so confused and down. Background info: knee replacement 12/07 - knee manipulation 3/08 - diagnosed by ortho and pain management doc with RSD 4/08. Had open debridement of knee 11/08, diagnosed with MS 3/09 and then diagnosed with ankylosing spondylitis (form of rheumatoid arthritis) 6/09. Ugh.
My knee is still so swollen and painful thought I would try another pain management dr my primary care dr suggested to try to get some sort of PT going again. Instead - these drs stated that they don't think I have RSD and want to "temporarily freeze" the nerve in my thigh. They think I have a compressed nerve due to the tourniquet used during the knee surgery. They want to freeze this nerve 2-3 times. But, they won't tell me what to expect as outcome.???They also would not give me reasons as why they don't think its RSD - just stated they were "highly suspicious" it wasn't. I almost feel like they thought I was imagining the pain and symptoms I have. The drs also stated that they don't want to tell me how this would improve my condition as I might imagine it! I felt like they would almost give me a placebo just to see how I react. I went to this University (I wont name) which is well respected in hopes of finding help for moving my leg but got something new to consider. I have had 3-4 different drs look at my leg and none suggested otherwise than RSD. Have you had drs turn the diagnoses around on you - and if so - how did you cope and what did you do? I have had so many things hit me the last 2 years - and I just don't feel right about this. But then, what if they are right...?? ARRRGG. Thanks for listening.

lindkaye,
Get ALL of their "notes" and reports in writing from them, and ask, so that you can make a good decision. You deserve this. Anyone in this much pain deserves this. Just call, and ask that it be mailed.
Along with their suggestions for exactly why they want to do, exactly what it is, that they want to do, and why, it's NOT RSD..

I can pretty much promise, that you'll get nothing in the mail. (If you have a fax machine, all the better!).
Ask for it to be FEDEXED! Push hard! And, call every day, until that secretary says, it's been fedexed, then you can get a "tracking" number! Or, if they're close, tell them you're coming in for your records! Don't let them say no!

Push them!
And, if they don't answer within a week, write them, certified, return receipt.
You'll soon get to know how certain they are of their 'diagnoses".

I'm sorry.

When you "just don't feel right"... then something is wrong! (TRUST YOURSELF!)
Don't go with it!

Still, the point boils down to, you've already decided, (reading your note, between the lines) that you have NO faith in these doctors, or their diagnoses.)

I agree with your feelings, btw!

So, you may as well start searching for an RSD doctor.
(ask these guys how many RSD cases's they've treated, and how many "successfully".)
(none are treated to curation).

Lindkaye,
You've still got a little ways to go.
Just to find a doctor, who will respect you, and the disease.

Get up, and get to work!
Do it early in the morning, then crash.
Change your schedule if you need to.

Just DO IT!

You're in one of the most difficult stages of this disease, (if you truly have it)...
And, you can't fake it.

So, my advice is, Carry On!

(ON YOUR SIDE!)

Pete
Asb

I had the docs "take back" the dx of rsd but I was dealing with WC(work comp) and that's what they're paid to do. I'm suspicious they aren't telling you what to expect. That is not a good procedure to be having done when you have rsd either. It could possibly make you worse! I'd have to tell them NO to going through with it.

There are symptoms that are pretty specific to rsd so I don't see why all the "waffling". Have they said specifically why?

Hugs,

Karen

I agree with AintSoBad, get those records, they have to give'em up because it's the law! Find a RSD doctor now and bring your records and keep collecting your records.

Lindkaye: I do agree about getting those records. Also like you it took me years before I was dx. Fianally all it took was a Dr who did an EMG on my L leg. then that was it. Breezy55 Hang in there!

I have a binder of every apt and test I have had. I bring that to the next doc. For myself I have seen so many specialists and had 3,4 etc opinions I have got varing input and things they feel may help. I never jump into anything and always look at the pros and cons before I do it. I would get another opinion on freezing the nerve. Before I was dx with rsd and pn one doc wanted to TTS surgery which would of been one of the worst things to have done and I am glad I did not. I am not saying you are the same but that you have to be careful. Also a doctor who will not answer your ?'s or concerns is not a doc I would do anything with even meds. Just my opinions. I had a doc send me out of his office with a video on a scs. Even if I were to have done it it would of not been with him who can't take 2 min. That is just my opinion.

Thanks to all for responding! since my last post, I have requested the med notes from the meeting with these new pain drs. I am anxious to see what they have said in the records.
Dejavu: I went to this appt at the "university" on the suggestion of my primary dr. My pain management dr I have is ok and is with another hospital - but when I go to him, he just asks me how I feel and fills out the prescription bottles. I need to get my leg moving - not just take pain pills! He just doesnt seem to be too interested any more in this issue. Maybe its partly my fault for not demanding care in that area, but I have brought it up to him with not much response back. Anyway, when I brought this up to my primary care dr - she suggested I see these drs at the university. When I went to the meeting with these new drs at the university, I mentioned my existing pain management dr with the other hospital to them, and told them I was not there to get pain meds, instead I was concerned about getting my leg to move. My RSD is not always red, but at times will turn deep red/purple color, besides being swollen all the time. It feels like a deep sunburn if someone touches it, and I can't sleep with my good leg touching it.
I just felt it very odd the way these University drs were acting, so secretly as if they felt I was trying to bluff them...?? Like you have all said, it if doesn't feel right - turn away. I don't intend on going ahead with this procedure unless they can meet with me again and answer my questions to a complete extent. Pete - I did ask the drs to include with the med records why they thought this was not RSD. They stated this goes against their policy in how they treat the patient questionable with RSD - they don't want to give the patient the "edge" in knowing how one with RSD would respond to their treatment.???? I'm thinking I might bring up my RSD to my rheumatologist that treats my AS and see what he thinks... No wonder depression goes with this disease!

You may have stated this but have you been to a neurologist? That was the first to bring up my rsd? I have been to many major hospitals and have often felt not heard and rush/brushed off so you are not alone. My current pain doc is at a teaching hospital but not as huge as Cleveland Clinic for ex but my care is much better. On a side note about the moving of your leg. I have my rsd there and though it is extremly painful I have made progress building up the amount I can do. I remember atthe pain clinic the director who knew a lot about rsd saying if I did not move I woud really have problems because of atrophy. I am thinking though the pain doc who put you on meds is trying to anabal you to be able to do more movement so that it can get better. The doc I had seen said rsd can be like a dog trying to catch its tail. It is key to move but one can't always to the degree needed because of pain level but often the treatments allow that so one is able. Of course everyone is different so your case it may be different so make sure to always check. Many thoughts

Hi Linkaye, It was a Ortho Hand Specialist that diagnosed me. I was misdiagnosed as having RA, even though didn't have evidence in blood test. Having RSD and MS is not all that uncommon. And Bone loss is definetly common. A nuclear med test for bone loss is one of the tests for positive proof of RSD. Are you saying the University Drs gave a positive diagnosis of RSD? I've read RSD reports from Drs. from SEATTLE. I know there are good RSD Doctors there.
There are still so many Drs. out thre that don't want to recognize or treat RSD. But the annual RSDSA meeting I attended this spring here in Scottsdale AZ said there are 50,000 new cases every year.
I wasn't diagnosed for 4 years-flew back to Oregon to a Sports Injury Group. The Hand Dr. diagnosed me in 1 minute, followed up by nuclear med test-positive. Ordered a Tens United and Started Physical Therapy next day. I had lot s psycial therapy and massage therapy. swimming. I am so grateful I've gone thru all of that-though very painful. I have full body RSD now, but thru having a great psychiatrist, neurologist, pharmacologist-3 in 1 Dr. I am the best health I had in 13 years. i still have really tough times, but thru neurotalk and therapy I am the best I can be right now. Still need to work on exercise, but am determined to get more active.
A good way to get a good RSD Dr. is to find a local support group and ask what Dr. they have. You can contact RSDSA and put in your zip code and they will give you a name and phone number of a contact person. There should be several in Seattle area.
The meetings are wonderful and so informative. They often have Drs. Pharmacists, physical therapists, as speakers.,
If I can find the Seattle Dr. that wrote about RSD, I PM you his same and hospital.
If you have RSD, you need RSD treatment! Your 'other' drs. don't have acceptable reasons in my opinion, of proof that you don't have RSD. Hang in there and don't give up.
Not that you want RSD, but you do want a correct diagnosis.
I lived in Olympia and Port Townsend, yes it's Rainy. We live in Arizona,115 degrees today. The west coast is so beautiful, but too rainy for us. The Dr. group I went to is in Eugene, Oregon where I was born and raised. It's a University town, where they always have good sports injury drs. like Seattle.
Don't give up, you'll get answers that are medically verified. Take care,loretta

I wanted to clear this point up. A bone scan is not positive proof because often, more than 50% of the time, rsd will not show up on a bone scan. I read a study done awhile back on the accuracy of bone scans and rsd. The "best" time after getting rsd to show up on a scan is in the first 3 months.

After that it's a 50/50 chance anything at all will show up. It is why doctors, well the smart ones anyway, do not use this as anything other than a diagnostic tool and will not take a "negative rsd" scan to mean the patient definitely does not have rsd. They know it only means the patient isn't showing bone changes anymore after the initial blood flow issues which are what usually cause positive scans.

I'm a good example. Having my first scan done at 5 months and it showed no rsd only the healing fracture in my kneecap. The next scan done exactly a year later, I had full body at that time, this scan was a full body one....showed absolutely nothing at all. I still had rsd and thankfully at the time they were ordered the docs still dx me with rsd despite their behavior shortly thereafter because of work comp.

Hugs,

Karen