Around the "diagnoses" pole we go
 

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. :confused: 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.

Around the "diagnoses " pole we go
 

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 :hug: 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.

I agree with getting your records... but please know... they don't have "GIVE" your records... They can and most will charge you so much per page----it can get quite expensive.

I have not had one doctor tell me I don't have RSD... In fact... I have seen 9 docs and all 9 concurred with my having RSD...this is rare or so I have been told.

I truly wish you the best... I hope you are able to find your true diagnosis soon.

:hug:
Abbie

I'm pretty darn sure they have to give you the records by law. Yes, they can charge you copy fees, but they have to give them up.
http://biotech.law.lsu.edu/Books/lbb/x201.htm

Please be very careful!
 

Hi lindakaye!:)

Yes, it is important to have your record. I have had the experience of having to pay for every page of my records. It can get fairly expensive! However, it is very important. I have found my Primary Care Physician will often give me a set of records, if I ask through him! However, if I request through anyone else, they send me to this record management company, and I am charged $1.00 per page.

(That seems totally outrageous to me. We pay to "generate" the record. It is our record. If we don't abuse this by asking for outrageous numbers of copies, etc., then... I think we should be entitled to at least one free set? "Copying" does not cost $1.00 per page!)

I am not clear, from reading your post. The 3-4 docs in agreement on RSD are not from "this University" you have referred to in your post? Is it the docs at "this University" that want to freeze the nerve, repeatedly...and won't give you an adequate explanation?

Also... if you've had 3-4 docs in agreement, you went to "this University" for?
What were you looking for at the university? More help? Additional confirmation? What?

My experience with some "University" docs? Some are ambitious about "publishing a paper." Some enthusiastically recruit for a "paper," and do not fully explain their "study," the potential adverse effects, and so much more. Be very careful. Some docs are so ambitious about "publishing," they really do not care much about what becomes of the patient. (As their deadline for publishing gets closer, they become more and more desperate... and it shows!):winky:

If they will not adequately explain any procedure to you, they are not respecting you and/or your right to informed consent. If this is the case... run...do not walk... away! Some of these types of docs/researchers prey upon patients truly needing/wanting help. They tap into the desperation and the deep need/desire for relief. Shame on them! Do not allow one of these types to "use" you to their very own advantage.

A really highly ethical research specialist will always explain fully...and will not place you at unnecessary risk. In these cases, if their research has been approved by the research board, there will be paperwork involved, etc. This paperwork will explain your rights, etc. Your participation requires your signature, verifying "informed consent," etc.

I have had the misfortune of knowing some specialists conducting tests on patients/patients blood, etc., without hospital board approval. (They have even diverted blood drawn for the hospital lab... to their personal research labs. There will be no record of this, of course. They will "do alot" in a lab and will talk a lot about what they are supposedly finding; yet, if you look at your record, they document little or nothing!)

I had learned to take my own notes in meetings/appointments with any doctor. I take extra notes when I am suspicious of the doctor/researcher.
I then have dates on notes (that match appt. times/dates) and I have specific topics/results mentioned. In reviewing official records, none of the more detailed info. was on record at all! No match!:eek:

In one case, the very serious, immediately threatening condition I'd (supposedly) had that had warranted immediate "xy and z," was never placed in my record! (How can that be? And...this "X, Y and Z" that had needed to be done immediatley was an experimental measure. I had been told it was far too dangerous for me to take time to get a rapid second opinion, too. I was told I would not be walking in 2-3 months if I did not consent immediately. "Immediately" may sometimes signify (tip one off to) "the hustle!" In this case, the "hustle" was blatant! That was over 10 years ago! I still walk... no difference because I did not do what they'd told me I'd had to do right then! No records of these conversations/medical recommendations actually exist! Surprise!:rolleyes:

Not many people would suspect these well-known researchers would do anything like this... to anyone... ever. Some of them are dangerously overly ambitious. Thankfully, this is probably not the majority.

The appt. notes did not reflect much of anything we'd discussed! That is very odd...and cause for concern. You might take notes...and keep them on file (in your own file). If this is difficult, you might ask permission to tape the appt. Taping an appt. keeps doctors very honest. They are much more careful about what they say!:winky:

I'd finally told the "specialists" that in order to comply with any of their suggestions, they'd have to convince my Primary Care Physician and my rheumy that I'd benefit from a procedure/treatment. This had built in a "safety" for me. If they had to try to "hoodwink" other bright doctors first, they cold not "hustle" me so easily. They'd disappeared once that "safety net" was put in place. All of the nonsense had then stopped.

Just a few thoughts! I am sure many will continue to add to these.

When we need help with chronic illness/pain, we are "sitting ducks" for some of these "less than ethical doctors/researchers." We must be extra careful!:winky:

Not all specialists/researchers are unethical. The few that are unethical may make a very negative difference in anyone's life, however.

I hope you find the help you need/deserve!:hug:

My apologies... I did mean that they can and often will charge for copies...many will not just give you copies without charging a fee. Sometimes it is a base fee plus a per page fee.

I apologize.. I just didn't get it worded correctly...

I understand. If I came off rough around the edges I apologize. Having been through the ringer with my wife with RSD and acquiring records, many in which are incomplete as DejaVu stated and in the dark about why my wife has not received her due compensation from Social Security, in the dark as far as doctor's submitted records to SS and what they in-fact say. That is one more hurdle I'm going to dread. If those records tiptoe around her condition I'm going to get very angry.

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

I have wanted to be told that I DO NOT have R S D !! I want some one to find what is wrong and FIX IT !! I never had any injury at all that I can remember.Took 14 Dr. to get a diag. It is so hard to live in pain and only to have treatment and no cure as of yet. I had a S C S almost a year ago and am so grateful that it has given me part of my life back. I however have not been able to even cut back on my meds.-But at least can walk again. I will be anxious to hear how all of this shakes out for you.

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

Does anyone know what the bone scan shows when you have RSD? This is my situation. I had a bone scan pre-RSD getting DX. It was just in hand & had probably been since 1991. About 5 years ago I had a bone scan that was great. They said I had the bones of a 20 year old (I was in my early 30's) . My doctor did it because I had lost 70 pounds & he wanted to make sure I had done it right & hadnt caused any problems. I had one done a few weeks ago because I have shrunk 3/4 of an inch in only 9 months. The bone scan showed bone loss & osteopenia (the begginings of osteoporosis). Do you think this is tied to my RSD. I havent had an appointment to talk to my doctor about this. Has this happened to anyone else?

It's my understanding that the bone scan shows the density of the bone in a 3D fashion... someone with RSD will show a decrease in bone density and an uptake or pooling blood in the bone. (ie..blood filling in where bone once was thicker.)

Note... not all people with RSD will have a positive bone scan that shows these things... Radiologist told me that it's a 50/50 shot. Said RSD is hard to diagnose because not everyone has every symptom.

I had X-rays done about 4 weeks apart by different docs... the orthopedic doc showed me how in 4 weeks my bones were already less dense... he diagnosed RSD after a thorough check. (He didn't know that I was already diagnosed with RSD by another doc...)

Hi there; thought I would answer a couple of your questions.
Daniella - My orthopedic surgeon was the first that thought I could have RSD from the symptoms and he felt there was nothing more he could do. So he referred me to the pain specialist. After a complete exam by the Pain specialist, and reviewing my records, he gave a clinical diagnoses of RSD. After that, I had 5 or 6 lumbar blocks which did help relieve the pain, only for about 5 hours each, but enough time to get to the Physical therepist. My problem now is that my husband's insurance only covers about 1500.00 per year for PT, which is about 5 or 6 visits. I try to do on my own, but get discouraged I guess too easily. Now with the MS and AS, my balance and pain is increased so it is even harder. I went to the University dr in hopes they could help me with the movement of my leg and plus I am having more pain behind my knee replacement. My pain dr (at another hospital) just seems to want to write the pain prescriptions, but I know I need more than that. I do have a neurologist, but he is for my MS.
Loretta if you could find the name of the dr in seattle, that would be wonderful. I have looked into RSD meetings around - but not energetically - and guess I should as it would probably help. Thanks again for all your responses. It does help to know that other people really do know how you feel!