As some of you know, I was on a 2-year study called TEARS out of the University of Alabama. That study ended 4 weeks ago. My 4-week re-check appointment was today. Today was the day Dr. Ding Dong was going to see how I was doing, go over the study data and x-rays that were supposed to be analyzed and back for today and perhaps even begin a new study. Well, it didn't go anything like that and I'm a rollercoaster of emotions right now. I'm angry, depressed and disgusted. I've been sicker than heck since last night, staying very close to the bathroom. I couldn't believe it..I was like no not right now I have the appointment tomorrow...the VERY important appointment...I can't miss it. So this morning, stomache cramps and all...I drag myself into my VERY important appointment with the Rhuemy. I check in, sit in the lobby close to an hour (which isn't bad considering I've had to wait up to 3 hours before). The assistant takes me back, weighs me, takes my blood pressure which is slightly on the high side and puts me in a room. Here comes Dr. Ding Dong and asks me how I'm doing and I tell him..."I'm doing okay, the last month as been really rough". He looks at my medical chart and then he says "We haven't seen you in quite awhile, are you on any medications, what are we seeing you for today"? I almost fell off the exam table, I really couldn't not believe that it really came out of his mouth. I looked straight at him and said "You've got to be kidding me. You requested this follow up appointment, I've been on your study for over 2-years". Now at this point, I'm sure he was embarrassed (as he should be) and started scrambling and trying to make excuses. He stated that he was sorry but they hadn't put my study chart with my regular medical chart. Keep in mind that I have been seeing this SAME doctor every 4-6 weeks for the last 2 1/2 years. I had a complete breakdown. I was pissed and crushed at the same time. I was crying so hard I could hardly breathe. Finally when I was able to calm myself enough I replied "I'm very disappointed, I know you see a lot of patients but I've been seeing you for over 2 years every 4-6 weeks. How are you supposed to help me if you don't even know who I am". I really don't think he knew what to say and quite frankly I don't think there's anything he could of said. I was so disgusted I wanted to just stand up and walk out...but what then? He started scrambling trying to get someone to locate my TEARS study chart...which they never did find and the visit ended with let me write you some scripts for prednisone, vicodin, enbrel and celebrex and then make an appointment for 4-weeks from today, we should have the results from the study by then. Are you F**KING kidding me??? Once again this is how efficient he is. I've had SEVERAL scripts for vicodin which don't help me worth a crap so he gave me a script the last time for the Tylox which isn't helping me either. I tell him the Tylox isn't doing anything for me and that it didn't even take away menstral cramps and that the vicodin has never worked very well. I ask him if I can take more of the Tylox or if there is something else and he hands me the script for vicodin and says "Try this again". I find this whole experience a complete nightmare. Oh and this will make you laugh...supposedly I have one of the best Rheumatologist and the best clinics in the nation. I left there feeling like I've wasted over 2 years of my life. My RA is certainly NOT in control by any means. I've gone from having flares in my knees and ankles to knees, ankles, jaw, wrists, fingers, hips, shoulders and elbows etc...this is unacceptable and flat out insane. Oh, another thing...while talking about my flares, pains and tenderness...I tried explaining to him about the strange pain in my hand and wrist that didn't really feel like it was a joint issue. He moves my wrist, taps on it and then tells me "yeah, that's carpule tunnel (sp). Well, that's just fanfreakintastic...thank you very much. With this doctor, no wonder I'm angry, depressed, feeling hopeless and declining. I was diagnosed with aggressive RA with a RA Factor of 189....don't ya think it should be treated just a little better? So I cried uncontrollably all the way home, telling myself I really need to see a pychiatrist before I completely flip out. And that is how my VERY important appointment went today. I know I did a lot of venting and I'm sorry there's so much negativity in this post. I'm thankful however, that there is a place to vent where people can relate and understand.
Peace & Love....Neasy
OMG...that is quite frightening. I'm not sure what to say except I feel for you.Sweetie,
that is what we are here for. VENT ON MY SISTER VENT ON!!!!!
Maybe it is time to move on to a new physician. Honey if you are feeling your body decline...DO NOT put your faith in that doctor to help. So when the next time comes around and you have gotten worse, he'll be sitting there with his thumb up his butt trying to figure out what went wrong...NO NO...don't fall for the okey doke.
Get to someone soon, if the medicines you are on aren't helping you get better and the doctor is not a true advocate for your well being. It maybe time to go! You have to do what is best for you.
I am going to get a 2nd opinion on what has been happening to me. I love my Rheumy, she is great...but I think she has become to familar with me and that my concerns are not being taken seriously. I never come in to see her not unless it is a scheduled appt, blood work, or follow up visit. I felt today she blew me off. And that for me is a NO NO. I can and will take my CO - PAY else where and not blink an eye till I get some answers.
Honey ((((NEASY))) I am sending some warm hugs your way. And if you aren't feeling good about this doc...go! You have to be the advocate for yourself when others aren't. This disease is nothing to play with, and if the doctor isn't willing to listen or shoot, even remember you were in the study...What else is he forgetting to do????
Be proactive...your health counts on it.
WARM HUGS and hope you get some well deserved relief,
Roblyn
(((neasy))) What a horrible appt! I agree it's time to get a 2nd opinion. Have you been on embrel or is this a new script for you? I would be wary of his throwing a lot of scripts your way willy nilly. It sounds like he wasn't listening at all to what you were telling him. I eventually left my first rheumy for similar reasons. The last few appts with him, I cried all the way home and thought I was going crazy. Finally, hubby was able to go with me and see for himself what a quack that doc was. It really does help to bring someone along if possible.
Hugs to you - you certainly do not deserve to be treated the way you were and I hope things get better for you soon.
OMG, no wonder they call it the TEARS program. You need to find a doctorOMG Neasy; that's horrible! Good for you for making him feel stupid. Dr. Ding Dong is right! (cept I probable would have come up with something slightly worse!)
I can't really believe he sent you away with those scripts either when he couldn't even remember you or why you were there today. Sounds as if he was trying to calm you down.
That's horrible Sweetie. I'm real sorry. I know you were looking forward to this appointment and deciding which way to go next. It's heart breaking when you come away from an appointment with an experience like that.
Hope the tummy issues are a little better this afternoon at least.
WOW, Amazing is all I can think to say, if these so call specialists are so inept in their "speciality" and there are so many that are,just listening to you guys, it totally freaks me out. My sister had to fire one and go to another too. WillWin2 you will be glad you did. I am so sorry. Why is it so difficult to get a good RA? You that have a good one seem to be the exception, not the rule. Maybe its the vast differences in this disease and how it effects each one differently, but "incompotence" seems to play a major role here.
God Bless you all..... Genesis
((((neasy))) I am so so sorry. I am just in shock at your treatment by this so called doctor. Oh neasy...my heart just breaks for you.
It is time for a 2nd opinion.
I wonder if there is someplace... some board you can report Dr. Ding Dong to. He seriously needs some reviewing.
((((((hugs))))
How could you be seeing him all that time and then say that to you??? I really don't get it. When I see doctors that often, we really get to know each other, interests, etc, through talking. Were you simply going into the office and seeing the nurse or were you actually seeing the doctor on a regular basis???
Sorry but I'm just confused.
Neasy he should know you and your file like the back of his hands! I only see mine every 3 months and she knows me well. I agree with getting a new Dr and one that does not do things that puts you in tears. Really, no pun intended. I have had Dr's early in the game send me into tears and just kept moving on to another one.I am really sorry. I suppose that Dr Jackass could have had a brain fart...happens to everybody on occasion. But still that was really awful and I am sorry especially since your RA has gotten worse.
Would tell us about the TEARS study someday when you are up to it?
Time to move on to greener pastures (and smarter doctors). Anyone who doesn't know you after you have been in HIS study for 2 years isn't worth a toss. You need to spend your time and effort on someone who will CARE for you and help you get your monster called RA under control.
Neasy,
I'm so sorry. How frustrating and disappointing for you! Please find another doctor.
Keep us posted.
Phats
Dear Neasy, waht a nightmare. Honestly, this dang stuff is tough enough without adding 'appointmHi all & thank you for the posts. This is the first chance I've had to make it back to the boards. I have requested a copy of my file from my Rheumatologist to include the 2 year study records as well. I'm sure this won't shock you since you know how my appointment went...they've lost it. I wish I was joking but I'm not...serious as it gets. They couldn't find my records from the study last Thursday at my nightmare appoinment and when I called today, they STILL had not located them. Dr. Ding Dong wrote me a script for Enbrel that my insurance won't approve until he fills out a medical necessity form. I've been fighting with them all week to get that done and umm....I'm still waiting. I did find a website called RateMDs.com put my two cents in. You're only allowed so many characters to rate the doctor so it's short but to the point. Feel free to go to the site and pull up Dr. Michael Burnette in Tampa, Florida if you like. I do have a doctors appointment with the same doctor in 3 weeks that I will be going to but I will be changing doctors as soon as I find one. I talked to a couple of people this week that have recommended Rheumatologist. I'm going to call one of them tomorrow that really sparked my interest to see if she's accepting new patients. She's a Rheumatologist that has RA. Not sure if that's a blessing or a curse but what I do know is at least she should be able to relate. If anyone else here has a recommendation for Tampa, Florida....I gladly welcome it. I finally broke down and made an appoinment with an attorney to re-file for disability. I meet with him tomorrow so we'll se how it goes and I'll let you know. One thing is for sure, I won't get denied for having a life insurance policy this time. I'm flaring like all get out...left shoulder, left knee and left index finger. Tomorrow is going to be rough but maybe in a way it's good that I'll be all jacked up tomorrow when I go to see the attorney. Goodness, I hope I'll be able to drive or I'll be scrambling to find a ride. Ya know, one of the first things Dr. Ding Dong said to me was to avoid stress and try to keep my stress level to a minimum with RA. Wouldn't it have been a little bit funny to stand up and yell right in his face "YOU ARE STRESSING ME OUT". I don't know, but the whole thought kind of made me giggle.
Peace & Love.....Neasy
Some of you have requested information on the University of Alabama Tears study. Here is a copy of my orginal post from a couple of years ago. If you have any questions or I can help in any way please feel free to post or pm me.
Good Morning All!!
First I want you all to know how grateful I am to have found this site and all of you. I'm gonna try to make this as sort as possible but I really need some feedback on this one. I'm lost, confused and quite frankly scared to death. Ok, here we go....I am 36 years old and was diagnosed with aggressive RA 3 weeks ago. Although the pain started in my knees about 3 years ago, I had no insurance until recently and quite frankly...after researching on the internet about the pain I was having, I was and am scared to death. It is now in my shoulders, hands, knees and ankles. Once I got my insurance, I had to kick myself in the butt and realize that being in denial was not going to help my problem so I made an appointment at the Rhuematologist. My biggest fear was confirmed with my RA factor coming back at 189 and the doc diagnosing me with class III aggressive RA. Now, here is what I need your feedback on...It seems as though what scared the life out of me in that one sentence my Doc said, actually gave him more excitement than a child with their first piece of candy. He immediately brought in paperwork for this University of Alabama Study called T.E.A.R.S and told me this was the best option for me. Of course, turns out he is the head investigator for this study. I have read this study over and over. I talked to a friend of my Dad's that has had RA for over 20 years who has severe joint damage and has undergone some joint replacement...she thought the study was exciting and wished it was available to her many years ago. I talked with a friend of my Mother's who is a retired Orthapedic Surgeon, his thought was absolutely NOT. T.E.A.R.S is a 2 year BLIND study with 4 different groups. Neither you or your doctor know what group you are in unless there is an emergency at which time your doctor will be told which group you are in. All subjects will receive weekly MTX. You will be assigned by chance to one of the 4 study groups. GROUP 1: aggressive treatment using etancercept in addition to MTX plus a placebo which will look like SSZ and HCQ throughout the study. GROUP 2: aggressive treatment using SSZ and HCQ in addition to MTX plus a placebo which will look like etanercept. GROUP 3: MTX and placebos for etanercept, SSZ and HCQ for 6 months. If the disease is not active enough to require step-up therapy at 6 months, no changes will be made. If the disease is active enough to require step-up therapy at 6 months, the treatment will be changed to MTX plus active etanercept while the placebo SSZ and placebo HCQ are continued. GROUP 4: MTX and placebos for etanercept, SSZ and HCQ for 6 months. If the disease is not active enough to require step-up therapy at 6 months no changes will be made. If the disease is active enough to require step-up therapy, the treatment will be changed to MTX plus active SSZ and active HCQ while the placebo for etancercept is continued.
I'm so lost in all of this! I'm newly diagnosed and feel as though I've been slapped in the face with this study that makes absolutely no sense to me....Heck, I'm still trying to get a grasp on what RA is all about. I do have to make a decision soon though and until then the Rheumy has me on samples of Celebrex. I welcome all opinions and/or comments you have and look forward to reading what you have to say. I apologize for the length of my post and appreciate you taking the time to read and respond. Peace & Love -- Neasy
Neasy - I don't know you as I am new and am unaware that you were in this study, but all I can say is that it confirms my continuing mantra that medical doctors are pure MORONS and it is so sad that you had to go through such a horrifying experience. Your one experienc has been my continuing experience for the past 7 years since my symptoms started and I am coming close to the decision that the AMA, pharmaceutical companies, and medical doctors in America should be shut down and put out of business. Radical, but they are just plain morons, incompetent and DANGEROUS. Take care, take a deep breathe, and start over, because that's the only thing we can do, one day at a time - hugs and prayers - CathyPS I have been looking for a doctor from Sarasota south to Marco Island, and so far Harley Cohen in Naples at least TESTED me. Probably too far of a drive, but come visit. PPS I tried filing a complaint against a Naples Florida rheumatologist in Tallahassee (State Capital) in person and found out that since 911 they closed the Department of Public Health to the public, so good luck with filing a complaint over the 800#. They dismissed my complaint by mail three days later with no investigation or receiving any of my documentation, but I did get a phone call saying they would take on the other doctor I had mentioned, but didnt have a complaint about. Flor-e-duh.How could you be seeing him all that time and then say that to you??? I really don't get it. When I see doctors that often, we really get to know each other, interests, etc, through talking. Were you simply going into the office and seeing the nurse or were you actually seeing the doctor on a regular basis???
MatthewFL,
In reply to your post. I have been seeing the same doctor for over 2 years. I have had visits with him on his study every 6 weeks for the past 2 years. When you join the TEARS study you work closely with one doctor and one nurse. I am used to exactly what you are used to...you see a doctor that often, you build a relationship, they know who you are. I don't get it either and I'll never be able to excuse it. I've been to a lot of doctors in my life and I have never had this bad of an experience.
Peace & Love...Neasy
Peace & Love....Neasy
Neasy, what a horrible experience! You definitely need to fire this rheumatologist.
Here's a link you might find useful when looking for a new dr. You can even rate your old dr.
Just click your state and you're in. The drs are listed alphabetically... hopefully the rheumatologists in your area will be listed there. http://www.ratemds.com/index.jsp
Here's the link for my fellow Canadians http://can.ratemds.com/canada/index.jsp