[lindkaye]

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.

[AintSoBad]

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

[GalenaFaolan]

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

[Jimking]

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.

[Breezy55]

Originally Posted by Jimking

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!

[daniella]

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.

[Abbie]

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.


Abbie

[Jimking]

Originally Posted by Abasaki

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.


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

[DejaVu]

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!)

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!

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!

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!

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!

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!

[Abbie]

Originally Posted by Jimking

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

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...