When you have a RA appointment, what does it consist of? When you waiting 2 to 4 months, it can give a person alot of stuff to think about. Different changes in our body, am I getting better, am I worse. What is the pain in my foot, elbow, neck.... should I walk more, or not. Are the meds working or is this the way I am suppose to feel when I'm on them.
When I finally make it to my appointment, the ritual begins. I wait for a breaking point in my exam, where I can vent my concerns in hopes to make since of all the changes during the last months. She always say "Its the Arthritis" But I want to know why! In the last 3 years I have had only 2 blood test. Both times, a nurse calls me and said "you have RA".
She told me if I wanted anything else checked I needed to go to another doctor, have them run tests and send her the reports. I have, she never mentions them. I when I ask she says "theres nothing in your file".
Last time she asked me what my RA count was at the beginning of my illness. She had to go call someone and get another file to find out from another dr.
I want to go to another specialist but I am afraid it will cause problems with my disability.
OK folks, talk to me, which fork of the yellow brick road should I take?
Girlfriend~my file at my RD's office is about 3inches thick. It's got information in there dating back to the very beginning.....and my very first Rd's office. They add to it everytime. Everything from my weight, BP, pulse.....all my labs, x-ray and MRI results. It's routine. I'd have to ask what's going on if they didn't have that in front of them everytime I went. That's very odd.
One thing that worries me about your statement is the 2 blood test in three years. What kind of medication are you on? I've had blood test at the VERY LEAST every three months since I was dx'ed over 12 years ago. The reason for this is because these DMARDS and antinflammatories such as MTX & Celebrex (And countless others) can cause serious sometimes fatal problems with your liver, kidney's and stomach.
If you are on these medications and your doctor is not checking your blood work on a regular basis she is risking your life!! If she refuses to monitor these medications I'd be willing to bet she's not following regulations. Anyone know? I'm certain that should be reported to someone.
Look out for you. If you don't; no one will.
Good Luck!!
Holly Cow Cynthia.
Someone help me out here.....if Cynthia is on all this medication and her RD is not proforming regular blood test to monitor her levels (Kidneys & Liver) doesn't that sound wrong?
If nothing else I'd call another RD's office and question there proceedures for someone on these medications.
Oh my god! You need a new Rheumy immediately. You are not being treated and tested appropriately for this disease. Get yourself a new one, explain what's going on and the lack of blood work, etc. Then, get yourself over to a Pulmonologist for a full work up.
The treatment you have received is appallable! If it is already affecting your lungs, then that's not good. A pulmonologist should be part of your medical team.
Do something immediately.
Thanks Deanna.....I think so as well; and I know Cynthia suspects somethings off or she wouldn't have posted this question; but this is very serious.
Most of the problems from the medications can be caught very quickly with routine test.....but if you aren't being tested? OMG.
Cynthia,Boy something's very wrong with this picture. It never ceases to amaze me the incompetent, uncaring physicians out there. Don't wait, Ivypoe, find a new doctor. There really are good ones out there - just don't be afraid to shop around until you find one!
Thank goodness for this forum - people can ask questions and figure out that they are receiving inferior care - otherwise they might just continue accepting it!
I have searched for a new RD doctor. I am on Medicare pluse medicaid, all the other doctors I have tried to see won't take medicaid, even though it is my secondary coverage.Gees... that doctor should be reported to the state medical board. Not monitoring for the effects of those drugs is just plain dangerous. Is this a rheumatologist? Or a GP? You need a new doctor.
My doc refuses to give patients their drugs if they don't follow the rules! Blood tests every 2 or 3 months, eye exam every 6 months if on plaquenil, etc. etc. She's a terrific doc and has worked with me to fit my treatments to my lifestyle.
I'd be curious to know it your medical coverage has anything to do with the neglectful treatment that you've received from this doctor.
Make sure that you mention to your current doctor that you have been studying RA and RA treatments and everything you read talks about regular monitoring of medications and you don't feel like they have been doing that. See what happens. Chances are she'll realize you're not the fool she's played you for and begin to treat you properly.
I'm real sorry for your struggles. This is really unfair!
OMG! Please dump the doc. I've never heard of not doing bloodwork and telling you that if you want more done, you need to go to another doc. Ivypoe, MTX needs to be monitor as it can cause liver damage.Did you happen to ask them the protocal for monitoring these medications? I'd love for you to have written proof with you the next time you see that doctor is you do in fact have to go again.
These blood test are very important.
You need to copy and paste what you wrote us and send it to the AMA and tell them your situation. Tell them you need a doctor that will serve your needs with your insurance. You should hear back from them promptly. I had a doctor hold my hand and tell me I had six months to live and then I told her I was on Medi-Cal and she pulled her hand away and said I don't accept Medi-Cal. Long story short, the AMA made her give me my money back and she was cited. Give it a try. RoxanneYou should be having regular liver function tests being on that much methotrexate. I know that they don't have to do bloodwork for Enbrel, but the MTX is a big one. I would state that as a concern for sure.You ask which fork in the road you should take...The one that has a BIG sign saying NEW DOCTOR!!!
ALSO LISTEN TO ROXY REPORT TO THE AMA
OK..so tell me, how do you contact the AMA? http://webapps.ama-assn.org/contactus/contactusMain.do;jsess ionid=D1FF18690231E35E89EF718E47B670D9 Crikey! My doc is worried about keeping me on plaquenil for so long and you are on some major medication. In the meantime maybe you should ask your regular doc to do some blood tests to be on the safe side. At least then you are doing something about it even if your rheumy is an idiot!Wow....Makes you wonder how some people can sleep at night....or make it through med school.
You can go to your primary doc and let them know how long it has been since you had labs and just ask for a routine exam or if your ins. covers a complete physical with blood work that would be helpful too. The bloodwork is just the routine stuff...CBC,BMP, LFTs...at least for safetys sake.
American Medical Association
I think you could start here.
The problems you are having with your lungs also need to be addressed immediately. My doctor told me that if I was ever diagnosed with pneumonia or another doctor told me I had a lung infection or bronchitis that was getting worse etc etc, to make sure he was contacted because this is a known risk with RA patients. Definitely go to a family doctor for a physical as someone mentioned already and request that tests be done immediately. Don't let them put you off or tell you it can wait.
This situation is unbelievable - I am so glad that you went searching for your own information. If it would help for other RA patients (us) to also speak up let us know
ok..lets add salt to the wound...I was picked up by medicaid to help pay for my medicare monthly payment. When my regular physician and my lung therapist even my mental health consulor found out I had medicaid they all dropped me. I asked my physician where in the hell do I go she said she had no idea. She told me most respectable doctors dont take medicaid anymore, they dont like being regulated by the state. I need medicaid to pay my monthly premium, I live on SS and have 2 children.What is 'a respectable doctor'? A doctor is a doctor is a doctor - this whole think makes me so furious. Your situation, Cynthia, is precisely the kind of situation Social Security is supposed to address in a society that wants to make sure all its people are taken care of. I know Medicaid pays very little to physicians, nowhere near what they make from other insurance organizations and self-paying patients, BUT don't they promise to 'first, do no harm'????? This doctor is doing harm in the way he/she is treating you.
Were you able to reach the right person at the AMA?
This is so depressing Ivy - When I was a single mom on Medi-Cal. I had an ovarian tumor and several doctors told me it looked like ovarian cancer. To get any decent medical advice I had to pay cash. I finally convinced a doctor at Stanford, teaching doctor rarely practiced to see me. Funny story - my bf was a phd in electrical engineering and he kept leaving messages at this doctor's office from "Dr. Richardson". We wanted this doctor as he specialized in ovarian cancer. To make a very long story short, the doctor finally called my bf back. He started talking medical talk to my bf who was a very smart man but finally said "hmmmmmmmmm, what is your specialty and my bf said electrical engineering but I would like you to see my gf. The best doctor in CA ended up doing the surgery pro bono and after six docs told me I was in stage 4 ovarian cancer, my tumor the size of a football was benign. I love that doctor. Dr. Bloom. I sent him xmas cards for years.You might also check out a University Teaching Hospital. Does medicare have a list of doctors? I know most insurance companies provide lists. Just be sure to call ahead of time and verifiy.
There has to be someone because of all the people on medicare. My former boyfriend was on medicare and he got really great doctors. He also went to St. Joseph's. Those Catholic hospitals can be really wonderful for helping people out.
There is also a list on the American College of Rheumatology at: http://www.rheumatology.org/directory/geo.asp?aud=mem.
Try your state insurance board. They'll be listed in the government blue pages.
Also try doing a search from your state insurance web site for medicaid providers.
Hope any of this helps.
Deanna, thank you very much. that web site gave me more inform than anything the Arthritis foundation gave me. still have to do the leg work on the insurance, but thats ok. Thanks again!
Stories like these just make me forever grateful for my job....and my medical insurance.
You'll be in my thoughts Cynthia.....I pray you get the treatment you deserve.
Wishing you the best Cynthia--- Thank you Fiona and I will keep everyone posted. My next app. is aug. 11. I am making a list of things I want done and questions to ask. cindy, are you going to a new dr or still this other guy that claims to be a dr?