Your Medical Rights & How Doctors Respond...

Your Medical Rights & How Doctors Respond

So, I left a message with the Mayo Clinic and received a call back yesterday.  I was so excited at the possibility of going to the Mayo Clinic for a review and visit of my current situation.  What I Found was the Rheumatology department is no longer taking new patients, but if my general practitioner calls and makes a referral, they will take me and make an appointment with me for a Rheumatologist, Toxicologist, AND a General Practitioner.  Here is where it gets interesting.

Up until this point in time, I thought my doctors were great, caring, attentive, with some minor differences from my experience with my Chicago doctors (i've only lived in NY for 3 1/2 years),e.g., no evening or weekend appointments are available, my general practitioner only talks to you if you go into the office, doesn't give you test results over the phone, you must go to this office, etc.

This morning, with great excitement, I called my general practitioner whom i really like and respect (He has his Ph.D and M.D. and is really good and referred by another doctor), to tell him about my Mayo Clinic call and that I am seeking a referral.  I spoke with this wife, who works in his office, not the doctor.  First, I found out they don't have any records from my Rheumatologist, except for the initial consultation letter dated May 25.  Second, I asked her to please confirm / help me understand if he (my general doc) is supposed to be the "center" of it all and be in communication with my other doctors and treat me "holistically" by reviewing my medical plan and ensuring i'm getting the best care, and she confirmed. However, she, too, was defensive (see below about defensiveness).

I asked the question about the general doc being my main doctor who is responsible for pulling together all of the information from all of my specialists because my cardiologist and rheumatologist told me that's the case, and the Mayo Clinic confirmed it by saying if I go to the Mayo Clinic and see any number of doctors that they all group together, discuss my case together, and provide me with a holistic report worked on by ALL OF THEM, and that the general practitioner has the responsibility to be the center of it all.   That's not the case in NY with my current doctor schema.  In fact, I OWN MY MEDICAL PATH AND I HAVE TO PUSH AND PUSH for information, e.g., I found a link in silicone and Mirena IUD and found the tests to test for silicone.   I also called and left messages with several toxicologists in NYC and NO ONE has called me back.  She said that he will not call and solicit conversations with my other doctors, that I have to ensure he gets the records, and make an appointment with him, and he'll discuss it with me.  HUH? Is that normal? I don't know.  Why wouldn't he call and talk to my other doctors about my case?

Back to the point, while speaking with my general practitioner's doctor's wife ( remember they also helped find the silicone test for me to give), she confirmed the doctor just works this way and won't talk to me on the phone, and in order to provide a "referral" to the Mayo Clinic he needs to understand what's going on. Okay, that's fair.

So...I called my Ob/GYN, my Rheumatologist's office, and next my eye doctor's office to get a copy of my file for myself and to send a copy of my entire file to my General Practitioner.

My Rheumatologist appears to be nice and concerned but very defensive.  IN fact, during my last in office visit with her, she has said to me she feels "attacked" and I said to her my experience is that she is defensive. She admitted she "sounded" and may appear to be defensive because "I just want to help you and do what i can to get you better and i'm frustrated."  Okay, why are you frustrated?  I'm asking for help on the silicone  in my blood, she knows nothing about it, but doesn't think it has ANYTHING AT ALL to do with my seronegative RA diagnosis, and conceded that she agreed that (a) I do the 21 day cleanse, (b) that i could see a toxicologists for help and that she would talk to him/her, (c) if she is so confident about her diagnosis as me having seronegative RA and that the IUD didn't cause it or create this in its intensity i've suffered, then why would she be defensive?  Defensive is rooted in feeling "threatened" -- why would my doctor be threatened by my questions?  [Link to a good site about defensive behavior:  http://www.healthy.net/Health/Article/Defensive_Communication/2533]

In her defense, I do believe she is doing the best she can, however, i'm starting to see different sides and behaviors with my doctors when I "question them" and I find that interesting.  For example, when I call her, she calls me back pretty immediately (or within an hour or two) and she is responsive.  Today, she called me back, and I told her I spoke with my general practitioner and he only has a letter from her dated May 25, and I'd like to ensure he gets a full copy, including her notes, to him for review, and she said they don't send all records to all doctors all the time, and I said, that's okay, I understand, but now i'm asking you to send a copy of my entire file, including your notes, to my doctor, please as I'm having all of my doctors do the same so I can sit with him and talk about my health plan.  She said okay no problem.

I then asked her (my rheumatologist) to send me a copy of my entire file including her notes, and she said fine, but she won't send her notes, and I asked "why?"  And she said because often the notes are scribbles and it can cause confusion with patients, etc.  And I said, "but it's my right to have your notes and are you saying you won't send them?"  She said, with frustration in her tone "fine, i'll send you everything."  I said, "Thank you."  I reiterated that I am in the middle of the cleanse, that i'm not feeling better in terms of pain (not that she asked how I was doing, she didn't), and that I would make an appointment to see here the week after next, and that i'll be done with my cleanse next weekend.  She said, fine.

Due to the hurricane, a lot of businesses are short staffed or offices are closed, so I'll have to follow up next week with my OB-GYN, because their office is closed due to the hurricane.  I'll be making a call to my eye doctor shortly to also request a copy of my file and that an entire copy go to my general practitioner.  The goal, of course, is to have my general practitioner to review my entire file from all of my specialists and discuss it together and ask, in person, for a referral to the Mayo Clinic.  I continue to be patient, open, and once my main doc has all of my information, hear what he has to say.  He is a very smart man and I am maintaining my optimism at this point.  Let's see what happens when I see him to holistically review all of my medical records to date with him and what he'll think about "what's next" in terms of a second and third opinion, because that's what i want and I have a right to it.

Finally, as for my health, I continue to have pain in my joints, most troubling joints are my fingers, wrists, elbows, feet, and knees (when I walk up or down stairs).  My tendons hurt as well particularly in my wrists and my muscles around my joints (wrists, elbows, shoulders, etc)....  I"m on 10 mg of steroids per day, and 8 pills of methotrexate per week, along with daily dose of folic acid, and interestingly, my Rheumatologist didn't even ask how i'm doing.  Usually she will ask "how are you feeling?", she is on the defensive and I wonder why besides the obvious that i've already alluded?  If she really cares about how I feel, why didn't she ask? Why is she defensive when I asked for my medical record including her notes?  Why is she annoyed by me asking and "sighing" on the other end of the phone?  Why would ANY DOCTOR care if I ask hard questions?  Why would any doctor be "defensive" or "frustrated" or "annoyed" with my questions about my health when I'm suffering in pain and living on steroids, and about to take Humira along with the other drugs per my RA doc?  

I want to be SURE i have the correct diagnosis, and I want to be sure by getting a second, third, and even fourth opinion if necessary.  Why is that a bad thing?  If my doctor made a mistake, okay, at least if she was cooperative and did have the same goal as me to get me better, why would it matter?

Some great links about your medical rights by State.  Here is a link to a PDF for New York State, too. (Just copy and paste the links herein into your browser.)

NY State: http://hpi.georgetown.edu/privacy/stateguides/ny/ny.pdf

Medical Records & Privacy: http://hpi.georgetown.edu/privacy/records.html

How to Request Your Medical Records: http://journal.ahima.org/2012/03/01/how-to-request-your-medical-records/

As for the cleanse, i am slimming down by the day.  My body feels good in terms of feeling "healthy", except for the pain and immobility when I have bad days despite the steroids, e.g., when I use my hands, walk a lot, etc. i suffer for it....   Added protein to diet on DAy 11, and will end the cleanse next Saturday, Nov. 10.  I'll have an appointment scheduled with my general practitioner that week to (1) redo my silicone serum test, and (2) review my medical records and have a discussion with him about a referral for a second opinion at the Mayo Clinic.

Since the removal of the IUD, i haven't had a period. NOTHING.  I presume it's because I still have synthetic hormones in my body preventing it from occurring.  I suppose I need to see my OB/GYN for a follow up to my IUD removal.  My OB/GYN, as I already stated in earlier post, has NO IDEA about silicone and the Mirena IUD and has NO patient who has had an adverse affect using the IUD nor any patient who has had any reaction like mine or any silicone in their blood, that she's aware of.

Time will tell...it always does.  In the meantime, I continue to be grateful for my safety and warm house with electricity.  So many others are not as fortunate as we are today...

Until the next post as I share my progress and experience.  I'm still seeking anyone who can provide information that is similar to my experience.  Information is power.