I feel you Brenda. My Myositis file of notes is huge...about 3" now. I quit keeping my monthly labs. I am not as good as I was in the start with all my notes but they have come in handy when I change doctors. I have noticed there is no one coordinating my care. My Oncologist and Radiologist talk. My Neurologist can see any tests done through a certain system but my Primary Care doctor doesn't use that system so everything he does is on another system. I saw my Radiology Oncologist this past week. They asked if they should send my records to my PCP. I told them no because he doesn't do anything with it. When I try to tell him what is going on with me and get him involved, he tells me he doesn't have time for that. My Gynecology Oncologist is yet on another system but if we do surgery in the hospital my insurance allows me to go to, other doctors can see those notes but he has no idea anything else going on with me. And that leaves out my regular gynecologist, eye doctor, and orthopedic.

The good news is my Neurologist does look at my history and wants to keep track. Sometimes I have to remind her but she does keep track and research. I suspect your doctor is similar to my GP that doesn't remember a damn thing. I would talk to your doctors and see who is coordinate your care.

Hi Brenda and Lexis. The system seems very complicated and expensive. Brenda next time you see all these people ask if you can have three month reviews now. Its terrible that you have to spend all your money on healthcare, if someone was overseeing this for you, you may be able to save some money, have some fun and feel better. Autumm

You are right Autumn, the American medical system can be expensive. It depends on what kind of insurance you have which is dictated by your employer and what they offer that you can afford. I have excellent insurance (HMO plan) but it feels very pieced together. I think the US is working pretty hard to fix a broken system. I'm not sure the solution and really don't want to debate it here as it is a heated subject.

I do agree with Autumn, Brenda. Why are you seeing everyone every month? I have follow ups every 3 months which is easier to handle. The only monthly thing I have is my blood draw which I have a standing order at the local hospital. I can see my results online and they are sent to my doctor. My doctor knows I look at my own labs and will call if I have questions. She also calls if she sees something concerning.

My Oncologist office has tried to get me to come in after each scan they do but I got mad and told them it is a $40 copay each time I step foot in their office so I don't want to come see a nurse for that. That the nurse can call me or they can schedule me an appointment with my Oncologist. That put a stop to that. I think most doctor's offices realize how expensive medical care is and will hopefully work with you to come up with a plan that is better or you financially.

Now that I am thinking about it, I have a doctor that always sends me out of the office with a purse full of prescription samples to help offset the cost of all my medical care. Having an extra month or two of samples helps my budget.

Really I fear we must be out own advocate and keep track ourselves. It is lots of work and lots of extra effort. Perhaps a "medical" journal of sort would help. I can only imagine how overwhelming it is.

Brenda, I totally relate to you. Doctors can only give medications which give comfort or slow the progress of disease. There is nothing that cures. I am on 6.5mg of prednisone. I feel horrible when I try a sparring drug. I think it is best to take the least amount of meds possible since side effects are horrible. I try to eat correctly so that I will feel better and that can make a difference too.

I am the one who coordinates my care. I inform each doctor of what the other doctor suggested and I bring paperwork & bloodwork copies. I know we live in a world of electronic records, but that does not mean coordinated care. Patient care is only as good as the expertise of the doctor. I try to let the right hand know what the left hand is doing. I keep notes so I can discuss things with the doctor.

I think it is important to remember that the doctors we see are constantly dealing with grumpy, complaining, sick people. I try to be positive, kind, and appreciative of their work. I think I get good results and my doctors are enthusiastic to help me.

I can understand how you feel and the frustration. We know that the answer is to trust The Lord and thank Him for the difficulties. I try to remember what the early Apostles experienced with their hardships and my aches & pains become nothing! I am on the prayer list at my church, and I know I am doing well thanks to prayer support.

Brenda and Lexis, I will pray for better medical coordination and pain management! Things will get better.

Last week after seeing my pain specialist who requires that I come in each month to pick up my new RX and for her to semi-count how much of my meds I still have, mainly because class 2 meds have to be on new orders. They can't be given with refills, I saw my rheumatologist whose last appt I canceled because I didn't have the money for the copay. He asked me why I canceled and I told him that I couldn't afford the copay and he told me that if I was on Medicare I wouldn't have a copay. He is trying to get me to go on SS and Medicae. He doesn't want me to work. I don't know if he understands that Medicare has a yearly deductible and it can be high without a secondary insurance. I understand that he wants me ti stop working and I would love to stop also, but I am not blessed with a husband or a savings to fall back on. He saw the total that I had paid that day for seeing both doctors and I told him that the copay was killing my budget and that some times I have three copays not just two. I try to schedule as many appts on one given day since I have to rely on my daughter to take me in and she has to take time off work to take me. She has set aside Wednesdays as my doctor appt days so I have a large chunk of money going to doctors that day. I want my Rhemy to be my primary doctor, but he wants my neurologist to be in charge. My neurologist is a good doctor but I don't want him to coordinate my cae. I called his office last week and the week prior regarding my infusion, which I was supposed to have this week and I still have not had a call back. This isn't the first time that this has happened. My Rheumy has been upset with him because he hasn't called him about my care even when my Rheumy who referred me to him, has asked him to contact him. I have seen my primary twice and she knows nothing about my illness. I just want to stop all my meds except for the pain meds. I don't want to take the infusion anymoe and I have already taken control of the visits with my Rheumy. I do my labs each month and if they are bad he will call me, as long as he has the results. The lab that completed my last tests didn't send him the results so his nurse had to call for them. This has happened more than once. I am not calling my neurologist again. I am going to wait until his office realizes that I have not been in and they return my call. I am relying more on faith and my Lord to get me thru these times and I am going to take a short trip to MI to visit with my mother and sister soon. I am also planning a cruise after the New Year when I will have vacation time back on the books. I am charging forward. I am no longer my illness. Thank you my many friends. These past two years I feel as if I have met you all in person and I look forward to reading what everyone has written and I come to this website first for answers to all my questions regarding symptoms and medications and just to vent. I feel as if we are family.

Hi Brenda. Your story makes me very sad. I am sad at the complete chaos that seems to be your medical care by doctors charging huge sums of money. Where do you go to complain. They need a good kick up their moral conscience. I am so pleased you are planning a holiday but concerned about your medical treatment. Keep in touch my friend. Autumm