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52 Responses to “Worst Things Doctors Say”

    1. Linda says:

      My first RA Doctor…in 1981…said 2 things to me…:I’ve seen worse” as I literally crawled into his office at the age of 30. He then told me, “you’ll be in a wheelchair by the time you’re 50” I never saw him again..found a wonderful RA dr. and I’m 67 and NOT in a wheelchair…

    2. Terri says:

      I have two worst comments: one was from the surgicial aide who, after carpal tunnel surgery (not needed because I was later diagnosed correctly with RA): “Wow, we had to scrape all this goopy stuff off…” and the other from the doctor beforehand: “No, both of your swollen ankle and knee joints have nothing to do with your two swollen wrists and hands. You need carpal tunnel surgery because you’re an administrative assistant.”

    3. Nancy C says:

      I went to the doctor with my left knee very, very swollen and lots of pain. The doc looked at it, felt the heat coming from it and said to my husband: I could draw fluid off her knee but I’m not going to. Make her straighten that knee out and walk right. If you have to, take your hand and push her knee straight! True unbelievable story!

    4. Laura says:

      Good rheum: Dr. Sunil Abraham, the Center for Rheumatology, in Albany, NY. Always checks multiple joints for swelling, strength, range of motion. Always checks heart and lungs. Invites discussion regarding treatment options. (n.b. have not yet needed to discuss pain meds, so can’t report there.)

    5. Nancy C says:

      I limped to the doctor with a very, very swollen left knee. He looked at my knee, felt the heat coming from it and said to my husband: I could draw fluid off her knee but I’m not going to. Make her straighten her knee out and walk right. If you have to, take your hand and push her knee straight. True story – unbelievable but true!

    6. Trinda Segard says:

      I was going to the same Dr for 10 yrs and it seemed he just treated me for just for what was going on at the time (not looking into things deeper). I had to ask for him to send me to a specialist after 3 months of having a throat infection.
      After blood test not to long ago because of severe fatigue was hanging on for days, he told m I just had just a virus and it would pass.
      I decided to get a new Dr! Found an aggressive one and had the right blood work done and found out my RF was high. Sent me to a wonderful RA Dr and after 2 yrs of trying different meds I’m finally on the right road in slowly this disease down!

    7. Susan says:

      When my long term disability insurance company sent me to their doctor for a second opinion, he looked at me and said, “you’re too pretty to be sick”. Then he smiled and walked out of the room.

    8. Andrea Noltner says:

      Yesterday the chiropractor told me to stop “poison” (orencia) and buy a juicer and a bunch of carrots. Apparently, carrot juice heals RA. If we’d only known…

    9. Janet Jacobs says:

      Drs. Kimberley Wilson and Hayes Wilson at Piedmont Rheumatology in Atlanta are wonderful. They take the time to listen and check me out thoroughly. They go more by symptoms than blood tests. I am one of those that blood work doesn’t show much of anything.

    10. Lin says:

      Walking is not an exercise! Really!?!? How does he know how slow or fast I walk? I guess he assumes because I have multiple autoimmune diseases, I must always be slow! :(

    11. jen says:

      these comments are depressing!! mostly, because I have literally heard all of these types of comments over the last 8yrs. almost every dr appointment I leave in tears trying to deal with these people and I realllly don’t want to be ‘that lady’ crying at the drs office.
      once, after barely being able to hoist myself onto the exam table (with help) a supposed rheum dr looks at me, with a total look of surprise on his face ..and asks…..”you’re in pain????” ….like he really couldn’t believe it ….I was actually confused … I didn’t know I had any choice in the matter …….DUH …..never went back

    12. Sondra says:

      My first Rheumatologist examined my by putting one drop of water on my index finger and stared at it about 90 seconds. Then he rolled his chair back, looked at me and said,” I have patients that can’t get up on the table, you can. I have patients that can’t feed themselves, you can. I have patients that can’t get out of bed at all, you can. Besides that, you’re an overeater (I weighed 115 lbs at the time). I told him that actually I’m a recovering anorexic and eat very little. He responded, yep, that’s what all overeaters say.” I asked him to do blood work, do something because I am dying. I asked him if he wanted me to wait until I couldn’t do those things before I came back. He told me I could come back in 3 months if I wanted to. I broke down crying, looked at him and said, “I’ll be dead in 3 months if you don’t help me.” His diagnosis – “depressed and emotionally unstable”. Thank God for my chiropractor. She helped get me in to my current Rheumatologist who has indeed saved my life.

    13. Barbara says:

      I was seeing a rheumatologist at University Hospital in Denver. He was trying to get me to take part in a research study for Xeljanz even though I was under control he kept saying he could fix it so I was part of the study. When I said I didn’t like the one side effect that causes sudden stomach or intestinal ruptures due to the fact that I live in a very rural area 1 hour from a hospital he just blew it off. When I finally said no thank you he got upset and told me to think of all the patients I could be helping by participating. Yeah lets slant the results by throwing in a “ringer” on the study and then risk their life due to the side effects. Needless to say I got away from University Hospital. Should have known after their shoddy care lead to my husband’s death.

    14. Kathleen says:

      I was referred to a dr. that my Rheumy said specialized in skeletal pain. I was naive. I didn’t know he was a pain specialist. After filling out numerous forms, signing a contract, and taking a drug test, he walks in the room and hands me a prescription for hydrocodone and says, “It’s tough having RA” and walked out of the room. He spent less than 3 minutes with me. He didn’t even aske me how I was feeling. I felt like he was a drug dealer. This, all because my rheumy didn’t want to continue to prescribe this medication that I had been taking for 10 years.

    15. Tiffani Laird says:

      I was sent to a highly regarded Rheumatologist in another state (6 hour drive one way) by my current Rheumatologist due to multiple different treatments not being effective. He told me that he hated having Nurses as patients because they know too much. He then asked why my doctor even bothered to have me seen by Him on such a high dose of Prednisone as he “wouldn’t see anything”, and those are just the highlights of that visit.

    16. Suzanne says:

      I am so glad I’m not the only one. I was diagnosed with RA 23 years ago-I’m 50 now. I was fortunate to have an amazing doctor for all this time, has just retired and I am having a very difficult time finding a new one. The things they have said made me wonder if I was mental…
      I am excited about your new section on recommended doctors, seems there are not many, if any over here in Palm Beach County. Keep up the good work!

    17. Kris says:

      My daughter was told by Dr that she was too fat to have RA. Another Dr told me that he did not see any reason to treat my RA because it was too expensive and time-consuming

    18. Dr. Daniel doc ever! Amy from nh.

    19. Melissa says:

      oh oh! I have one. Actually two.

      My Rheumy 3 months after the RA-Lung diagnosis during a really bad lung flare “but you’re not nearly as bad off as my other interstiticals…” As I sat there ready to eat my own hair to muffle the screams of pain in my lungs with each breath.

      My GP after discussing mortality rates of RA-Lung “but you’ve got time, you’re in great shape…” 3 months later I had two cracked ribs from a lung flare, and 4 weeks after that I was in ICU with bi-lateral pulmonary emboli that I (according to the ER doctor) should not have walked away from.

      I always say – if you want to know what a disease is really like, for goodness sake, don’t ask a doctor, ask someone who has it.

    20. Joan Zamojcin says:

      My first rheumatologist examined my hands which hurt so much I could not feed myself and were very swollen. I also had a positive CRP. He kept telling me I did not “want” to have RA.” He offered me shots in my knees (which were not hurting) and cold can therapy (soda cans to roll under my feet) which also were not hurting). He sent me for OT to pick up pennies, have hot wax treatments and have gloves made that were so cumbersome I could do absolutely nothing with them on. A wonderful orthopedic doc recommended that I get a second opinion and gave me my current doctor’s name. I am currently on methotrexate and Orencia and doing nicely.

    21. Maria says:

      My doctor told me “RA? No, you have pain because its a pulled muscle o a muscle spasms. Well, if you cant bend and touch your toes, I can fix that up quickly. But its definitely not RA”.

    22. Lisa says:

      When trying to find a doctor to diagnose the cause of the inflamation in my fingers, hands, and wrists I was sent to a “hand specialist”. After examining and hearing of my pain he declared ” it’s not carpal tunnel”. I asked what he thought and he replied “your getting older! you’ll have to learn to live with it”. 7 months later and now being treated by an RA specialist, she said ” you have one of the worst cases I’ve seen in years”.
      Continue pushing and searching until you find a doctor that listens and doesn’t dismiss!

    23. Marilyn says:

      I was diagnosed with RA just over a year ago. Dr. David Minna at UT Southwestern in Dallas has run many tests, listens to me, does a thorough exam each visit and has adjusted and worked with me on meds. Very pleased, especially after reading so many bad doc experiences.

    24. neville butler says:

      I have NO bad Doctor comments to make, only GOOD comments about the doctors treating my RA. DR, / professor Susana Proudman & the other doctors from The Royal Adelaide Hospital, Australia. I have had RA for about 8/9 years & no side affects that I can tell, yet/so far, touch wood. I am however on a cocktail of medication.

    25. Kerry says:

      I always take the time to make sure I have showered, put my make-up on and do my hair. It takes me about two hours to get ready but if I do not do this then I will feel completely conquered by this disease. Taking care of myself is a must. However, this comes with a price, all my doctors think I’m feeling just fine. It never fails, I can be in the worst pain and the doctor will take one look at me and say,”but you look great” and so the rest of the visit seems almost a waste of my time. I hate it. I always see people sitting in the waiting room in their PJ’s and sweats and I’m starting to think there is a reason, maybe the doctor just takes one look at them and thinks, “Yea this one needs my help”. Sad, but I think it’s true.

    26. Heather says:

      A family member bugged and bugged me to see her rheumatologist. My husband went with me and first thing the rheumatologist said was, “your case is so complex it would be best if you went to a university hospital”. And then, “At least you are NOT in a wheel chair.” I was so stunned. My aunt also has RA, she has had both hips replaced, lost an eye, her hands both have swan deformity and she still walks, without a walker. Last time I saw my aunt she was walking around with a broken foot. Does that mean she has NO pain? Is she lucky? No way, she has endured horrible pain. As I have and most people with RA have suffered. RA is different for everyone and impacts each person’s life in different ways. I am glad I have a place to come where people understand and are supportive. A lot of people in my life don’t understand RA. It isolates you. Fight on warriors and God bless.

    27. Thomas Boyer says:

      Amy, I’ve been seeing Dr. Shirley (“the best rheum in the state”) for over 3 years. He refuses to diagnose me with anything. Until last fall (when he put me on sulfasalazine which made me feel awful for about four months until he took me off), he only ever gave me painkillers. He ordered a full body bone scan ($2000), and a nerve conductivity test ($2000), and tons of blood work (“you don’t have high inflammation markers, and your RF is negligible elevated”). He’s watched damage spread from my hands/wrists (cortisone injections – useless) to my feet (prescription orthotics -$300, useless) and now to my lower back (two vertebrae joints with no cartilage left whatsoever). He was going to try me on Ortezla, but “you don’t have any swelling”. No … I never do. Ever.

      I want to try Dr. Kunz. But will my current rheumy stop seeing me? I feel prisoner to the repeated hope that maybe in six months he’ll try me on something that will help. Not just opioids, while I watch irreversible damage progress.

    28. Telyn says:

      One doctor who did not want to diagnose me told me the following lies in regards to my pain:

      “I don’t know what to tell you. You don’t have an autoimmune arthritis. It’s rare for arthritis to affect your hands and autoimmune diseases rarely affect the neck”

      After being on only one treatment (plaquenil) I was also told.

      “You will have to learn to get use to your pain”.

      Umm, no. I’m feeling much better now on Humira.

    29. Carrie says:

      I have encountered SO many rude doctors / front offices! My Primary Doctor made rash generalizations, brushing off my pain and swelling, saying she couldn’t make this an ‘ urgent’ referral to a rheumatologist, and tried to tell me getting an appointment 2 months out was good (when I couldn’t walk due to swollen knees).

      THEN I had an entire Rheumatology Associates doctors practice (Rheumatology Associates of Hartford, CT) who NEVER told me when my Rheumatologist retired, and refused to let me be seen by either of the other 2 doctors in the practice (even though I had multiple referrals to one of them). Apparently, it is practice policy to “not allow Dr. Stocker’s former patients to be seen by the other 2 doctors in the practice”. I had my Orthopedic call on my behalf, and they REFUSED to put my doctor through to the rheumatologist!

      Was also in dyer need of a drain, and they couldn’t see me within a 3 day period… said it was too short notice… I asked where I was supposed to go and they said “that is your issue to figure out”.

      Nice doctors make all the difference!!!

    30. Cathy says:

      As I hobbled into my PCP’s office for my appointment, he said “You need to get more active and do some cardio. You need to lose some weight.”

    31. Carmen Cady says:

      I just started with a rheumatologist, although he spent 1 1/2 hours with me, I feel he heard what he wanted to and not what I’m experiencing. Since, my symptoms are worse and he still tells me I haven’t yet met all the criteria (blood work is negative), even though its clear to me I have RA, runs in my family too.The swelling is bad now, I’m unable to put a lot of pressure on my toes and ankles, my fingers are so stiff they’re immobile at times, not to mention I could barely move due to hip pain and my neck for a year was so stiff and immobile first thing in the morning, thats just a few of my joint issues, but because I can touch the ground and he didn’t see swelling on our visit, he won’t dx me. He says fibro. I say he’s is reaching. What more is there, disability? Im frustrated. I got a referral to another rheumatologist, 4 months from now….

    32. Dianna Blackketter says:

      My Rheumatologist is great. He is caring, compassionate, he never says anything that is unkind, never doubts me, and seems to understand pain issues. He has a great reputation. If I am not well and call him, he gets on the phone and talks to me. I highly recommend him. His name is Mark Stern. He is with The Springfield Clinic, in Springfield Illinois. He is so good to me ! I hope he gets added to your list.

    33. Chessa says:

      I stated to my former rheumatologist that we need to do something different with my meds because I was losing range of motion. He said, “you shouldn’t be able to bend that much anyway.”

    34. blake says:

      im 21 got ra 2 years ago and ive been dealing with my elbow bursitis for more than 6 months. Which i think it is contributing to me not being able to get into remission. Ive noticed that now that every single thing i do makes my bones crack.
      what i want to know if any of you guy know if there is an injection that gets rid of inflammation besides cortisone shot?

    35. blake says:

      When i first got ra, i went to the hospital because i was crippled from everywhere. The doctor told me “the hospital is not for people with rheumatoid arthritis”. Well then were is because my rheumatologist will not help me without appointment.

    36. blake says:

      found out today i have osteoporosis for being on steriods to for 2 years

    37. blake says:

      actually not to sure waiting to see a doc because ive been having cracking joints everywhere

    38. Jamie Paske says:

      I had a rheumatologist tell me they don’t like to give out pain meds because they feel like they failed to manage the disease (???!!!).
      It floored me. RA is a disease that results in chronic pain, is hard to manage and is unpredictable for some. What about failing the patient when you don’t help them with their quality of life?

    39. Lisa Woodrow says:

      After moving to a new state, I had to wait 6 months to see the rheumatologist. He looked at me for about 3 seconds before declaring my diagnosis bogus. In fact, there’s nothing wrong with me, and he would know because he sees thousands of people with my condition. I’m not flaring right now. “Well I can’t treat what I can’t see.” (Why don’t you take a look at my chart, nitwit!)

    40. Elizabeth Riggs says:

      Dr. Hayes Wilson is the son of the incredibly compassionate and competent rheumatologist who cared for my mother. He looks a lot like his late Dad and is just as compassionate and competent. I drive early 40 miles each way to see him, and if I had to drive twice as far, I’d still go to him. He is the reason we are staying in the Atlanta area. I’m convinced I’d not find a rheumdoc as good anywhere else we might move. His wife is just as good. I just don’t see her as frequently. They are both a lot of fun, too!

    41. Renee says:

      This is a warning to all those taking prednisone for long-term management of RA or any other autoimmune disorder. My best friend was diagnosed with Lupus 15 years ago. She has been taking prednisone almost continually since then (because it reduced inflammation and made her feel normal, masking the symptoms of her disease), and the problems this has caused have been serious. She was warned about long-term use of prednisone but didn’t take heed until recently. Her kidneys are now failing, she developed Cushing’s Disease, her adrenal glands have atrophied and are no longer functional, and she is waiting for test results to find out if she has cervical cancer. All these problems caused by long-term use of prednisone. It suppresses your immune system–which may be attacking your own body, but it also attacks cancer cells and infections. Please consider, if you take prednisone, to use it periodically (not daily for years) so your body doesn’t develop these serious problems. It’s likely that the treatment–specifically, complications from long-term prednisone use–will kill my friend (as opposed to the original disease itself, though it had that potential too). Please stay informed and take care of yourself, and use prednisone in moderation. Treatment should not cause more disease or death!

    42. Georjan Overman says:

      Well, my second rheumatologist (after 4 month wait because this was at a highly respected teaching hospital) told me that the pain in my feet “had nothing to do with RA.” I found out later (from excellent current RA doctor) that I had developed peripheral neuropathy as a reaction to methotrexate. Second doctor upped MTX dose, decided to stop drug when neuropathy symptoms reached my tongue. She switched me to leflunomide; I took that for a month and stopped on my own when the neuropathy symptoms got worse. Then sulfasalazine, which caused a serious allergic reaction. During all this, she never returned any of my phone calls. I would leave messages (“I am having trouble speaking, what should I do?”) and a nurse would return the call 2 weeks later. The nurse told me subsequently to quit calling her directly (via caller ID). Thankfully I left that incompetent practice and found my third RA doctor. After 3 years on xeljanz, I went into remission and am now drug-free and almost pain-free. Neuropathy is still an issue — once you have it, it can take years to resolve, or never. The most infuriating thing about 2nd doctor was having symptoms dismissed, with a superior attitude that I’ll bet many of you have experienced. If you want to be treated with contempt, all you have to be, it seems, is a woman of a certain age who is in pain. (And this was a female doctor.)

      • Georjan, unfortunately, I’ve seen that attitude in some women doctors also. I wonder if they suppose we’ve somehow chosen to be in our situation (unrelenting pain).

    43. Fran Harris says:

      My Rheumy doctor is Dr. Ho Bing Patrick Oei, Irving, TX. He is an amazing doctor who listens.

    44. Dianne says:

      My knee was inflamed (again) and the PA said, “I just think this is RA, your hands yes but… indulge me here… have you been tested for Lyme Disease?”
      Then she ultrasounded the area and saw no fluid to extract only inflamed synovial tissue! Then she said “Don’t worry if the drugs are still not working. Worst case scenario all that synovial tissue can be removed surgically!” Yes. Hooray.

    45. Dianne says:

      Sorry – meant to say that she thought my knee was NOT RA

    46. Carisa says:

      I was told by my primary care physician that I had a positive blood test for RA and he sent me to a rheumatologist. My ESR SED and anti ccp were all high and a positive ANA. I had no idea what all of that meant at the time. Lots of swelling and pain in my hands and wrists. The rheumatologist said to me ” I would be able to tell from across the room if you have RA and there is no way you have it. You are wasting my time” I was afraid to go to another doctor for years. I am now dealing with severe RA lots of meds and daily pain that is unbearable at times. I wish I was able to back and tell him what he has done to me.

    47. Mary Griswold says:

      I was diagnosed with RD @ 5 years of age – I am now 57. With the advent of Remicade years ago, I asked my Rheumatologist whether he thought I would be a candidate for it. His response: “You’re not far enough along in the disease.” Insulted, I immediately switched doctors and Remicade was offered to me for consideration, before I had the chance to ask. Remicade changed my life. I had success with it for 14-years, until it stopped working. I can only imagine the course & destruction this disease would have taken w/o the Remicade and am forever grateful the wisdom of my new doctor.
      I have tried several different biologics since without success and am currently taking Rituximab infusions every 6-months. I’ve had 3-treatments thus far. I don’t feel it is working, but my Rheum does not want to throw the towel in just yet. Trying to keep my chin up has been difficult.

    48. Lee Rice says:

      My Rheumy doctor is the greatest, but she did make a statement that I wondered what she was getting at. I was tested beyond my wildest imagination. I actually asked the two doctors if they were testing me for space flight? However, one visit, she looked at the computer and then looked at me and said…Boy you have great hips. Most women would love to have those hips. That was not what I had been there to see her about. I asked her for something stronger in the pain medicine. My son was with me at that visit and repeated the same request. She said she does not prescribe pain meds. WHAT? So, now I am on injections once a week and Infusion every few weeks. She wants my General to prescribe the meds.

    49. One Rhummie after roughly moving my joints all over the place and causing so much pain I had tears streaming down my face said to me, “You have nothing wrong. Dogs are ANA positive up here.” He decided after all my obvious symptoms that my ANA positive test was false. He also told me I don’t want to go down the pain killer road. Well duh, who does. I was in so much pain, it was the only thing allowing me to function.

      My present Rheumie last time I saw her told me that I don’t fit the box. Does the disease know it’s supposed to fit in the box? As of now the things her textbook tells her to look for are showing up.

      I saw me GP last week because I can’t walk on my foot. My big toe joints are messed up. He who didn’t believe I had RA for three years then tells me, oh it’s just your RA. Well duh, can we fix it?!

      I’m beyond frustrated with the medial world.

    50. Sharon says:

      After my internist diagnosed me with RA, he said “Cheer up! At least it’s RA and not OA. There are treatments for RA”

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