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!