Had my first appointment yesterday with the rheumatologist. After an hour, he declared that I didn't have RA and that I "more likely have bone cancer or vasculitis". Then he set me up with a bone scan and referred to a physiatrist (I had a choice - neurologist or a physiatrist - I told him he should choose for me). The appointment left me stunned and disappointed. I saw my family doctor yesterday too. He reassured me in saying that I don't likely have bone cancer. He refilled my Oxycodone and gave me some Arthrotec samples to try.
I'm still convinced I have RA or something very similar - and I like reading your posts, so I'll stick around for awhile
I'm so sorry, that sounds awful! I'm glad your family dr. helped you out with your pain, until you get an answer, and hopefully he can also give some direction.
I will tell you that RA can be a 'diagnosis of exclusion', where they rule everything else out first. My daughter had testing for cancer, too. It was very stressful, waiting, but once you know, you know and you can move on.
Take care and keep us updated!
Kara, you poor baby, I can imagine how upset you must be. I've got to say, your RD really jumped the gun to say you "more likely have bone cancer or vasculitis". Every doctor I've ever talked to (RD, neuros, ENT, etc.) has NEVER said "you more likely have." They have, if anything, only said what they were testing for to rule out. That's a huge difference from telling a patient they more likely have a disease, and until he gets the tests back, he can't say with any certainty that you have either of those diseases. Your family doctor was more on the mark and I don't think he was just trying to stop you from being scared. He was telling it the way it really is. He doesn't know, the RD doesn't know and the RD was way off base telling you such awful news without having any proof. He's a jerk and has no compassion and it makes me furious to think of what he's put you through, probably for no good reason at all. OK, something's wrong, but chances are good it's something manageble and much less scary than throwing around the "C" word. He should be kicked to the curb for putting such fear in you. It was so unnecessary. GEEZE!
Don't let him throw you - pay more attention to your family doctor and go through the process of ruling things out. It does sometimes take a while.
First, I was told that rheumatologists won't see a new patient unless they are on antidepressants first.
Then, the last time I tried to make an appointment to find a new rheumatologist, they said I had to provide my recent rheumatologist's records, including chart notes, then they would decide if they wanted me to be their patient and would call to set an appointment, and they were three months away for a new patient appointment.
This is insane. Don't give up Kara. I read a stat in here that women on average take 9 years to be diagnosed with RA, men on the first appointment. Best of luck ~~ Cathy
Thanks guys - I'm definitely feeling better today. I had a hard time functioning yesterday after the doctor's comment. I really think he erred in suggesting anything without further investigations. I'm taking your advice Jesse and looking to my family doctor for direction, and hopefully the answers.Some Drs really need to look at their 'bedside manners', don't they. Becky wasn't feeling too bad with her JIA until her new rheumy told her bluntly in November how bad she had it, was heading towards a 'dropping off the scale point' (what scale? whose scale?) and that it had spread to every single joint in her body except her left elbow. Straaaaange.... ever since that appt she has felt sore in all the joints she previously didn't know about - except her left elbow...and has been depressed. A 10 year old depressed is pretty heartbreaking but fortunately she is such a positive good humoured little soul that she has now shaken out of it. We're back with the rheumy Friday 11th Jan for her joint injections - wonder what words of wisdom he'll utter this time!
Kara - I hope you are soon properly dxd, the waiting and uncertainty must be awful for you. Take care and let us know!
Dee
Wow Kara. To toss out a likely diagnosis of cancer when that isn't even that doctor's area of expertise is insane. Still, it's out their now so I guess it's hard not to consider it. It would be for me. Try not to let it throw you. Wait until you can be seen by a doctor who actually knows what he's talking about before you worry about it too much. I bet it turns out to be nothing that can't be managed. Certainly not cancer. I will add you to my prayer list though, that you can have peace and joy while you wait to see the physiatrist. And that you won't have to wait very long. And that he discovers what is really going on.
Ya know, since many doctors are so quick to say that various problems are "in our head" wouldn't you think they'd use that to their advantage and be especially careful with what they tell us? It's no secret that our minds can help make or break us and is a powerful tool either way. Every doctor should be putting a good spin on everything they tell us. That's not to say they shouldn't be honest, but they should be extremely careful in the words they choose. There's always more than one way a statement can be made and the way it comes out could make a world of difference in how patients feel and how they see themselves. Making the best of even a bad situation, in the way the diagnosis and patient/doctor dialogue are conducted, can have a positive impact on the patients' mental state and therefore, their overall health. I truly believe that.
Dee, what that doctor did to your daughter was criminal. At the very least, he should have spoken to you in private about her condition.
As for that anti-depressant bit, I'm not surprised, JSNM. That was the ENT doctor's suggestion to help me deal with the new and increased ringing in my ears. I'm not depressed, I need to stop the cause, not put myself into a stupor so I can just ignore it. Again....GEEZE!
Kara, Like everyone else has stated, the RD that you saw was more than insensitive, he was an idiot to make a statement like that. If I were your internist I'd think twice about referring patients to him. You may find you have RA afterall. Sometimes it takes years for a diagnosis to be made. Keep us posted on how you're doing. Lindy
How utterly ridiculous to throw cancer at you on the first visit without having done some major investigation and testing! That's just plain cruel. I'd like to point out that I've never been on anti-depressents either and I have RA for 8 years. It has never been a requirement for any RD to see me....Lin - I had been referred by a neurologist to a rheumatologist about four years before I was finally diagnosed, and he talked with me (no examination or looked at the blood work I brought in) and said I was depressed and making up my pain for drugs, and refused to test me (I got his records). So I went off and was depressed for about three years. I got so sick being depressed that a good friend recommended a doctor over a 100 miles away, who was open-minded and friendly. I went and saw him, and he said you need to see a rheumatologist immediately (it was like Groundhog's Day, same thing over and over).
He said that rheumatologists like to see patients already on anti-depressants before they come in, so I said fine, as I was desparate with depression causing all my symptoms (nodules, joint pain, swollen and inflamed joints, dryness, fatigue, malaise, wasting episodes - same symptoms as four years before). And the new rheumatologist (because I wasn't depressed now) ran the tests the first one should have run three years earlier, and wow, I have MCTD of RA, lupus, scleroderma, polymysistis, and inflammation anemia. I am in the 97% of "I am screwed" with this diagnosis, but at least I was finally taken seriously and am under treatment, but I lost three years and we all know the importance of early diagnosis.
After 8 weeks on this anti-depressant, became so depressed in about a 48 hour period, I threw out the script. I also had not revealed that I was (still do) seeing a therapist over the years because I couldn't believe how screwed up these doctors were, and paid to take the Minnesota test for mental problems to determine if I they were right, that my symptoms were from depression. It came back as no depression, but anxiety, fear, worry and anger. I wonder why.
The interesting part for me is that when I got this quack rheumatologist's notes, I had also gone to an opthalmologist for the dry eyes, and he had written him a letter suggesting MCTD. He was spot on, and is the one treating me now for these corneal ulcers and blindness episodes, and I love him.
This is insane, and the doctors are the ones making us crazy.
Oh, listen....I've got a million of 'em but here is just one:
Before I was diagnosed with RA-ILD, I set up an appt. with a pulmonologist to discuss the fibrosis that the radiologist had noted in his report from my CXR. During the appt. the pulmonologist told me he was going to order a lung CT. I said to him, "From the symptoms I've described to you, and what you see on the CXR, what do you think is going on here?". His reply, without missing a beat was, "Most likely lung cancer but we'll discuss this further just as soon as my partner and I return from our vacation to Peru". "I'll have the CT results and radiology report in by then".
I went and got the CT. Had it burned onto a disc and took it straight to a lung specialist at the UofM who diagnosed my RA associated ILD.
Never went back to this melodramatic buffoon who just about gave me a heart attack with his pronouncement. And I hope he got punched in the nose by a big, burly Sherpa while he was in Peru.
K.
You know i called the lab one day and tryed to get my RA titer score. RF score whatever. They said they only put positive and negative because they do not like to scare people. They said some people in the past had very high scores and thought they had cancer or something and that was not even the case. So they only give the score to doctors now. And do not right it on the lab work. I still do not know my score? Just positive. Some labs do give the score to patients but not mine.
I am sorry, Kara
Katalina - you are hilarious! Keep the faith, and you have the right attitude. We know its them, not us. Cathy
I have been treated now for RA for about 3 years and suffered horribly with it for about 5 years before it was diagnosed. No one ever suggested an anti-depressant med. Don't understand how an anti-depressant would help with walking, swelling and hurting joints.
I would never go back to that doctor who said you might have cancer. I also found the doctors "rule out" to get the arthritis approach. My GP had to send my records, sed rate, eTC. to the rd for them to decide if they would see me. My hands were starting to slant to the right and one hand to be blind not to see what I had. I had tested positive, had a high sed rate, had horriblly swellen ankles and wrists, slanted fingers, swollen joints on my hands---It could not haven clearer if I had taken out a bulletin board
I find the entire medical community and system is difficult at best. I just don't think like them and have problems dealing with them. If I didnt need the meds--they would never see me in their offices. Hopefully the next doctors you see will have a better grasp on the medcial field. Good luck.
Your doctor sounds as bad as the ones I saw. I even had a fat doctor tell me that I just needed to lose weight... It took 2 years of screaming "please cut my arm off , because I can't take the pain anymore" ( I couldn't even use my hands anymore) before a nurse with Kaiser decided to send me to a Rheumatologist. They kept telling me I was just depressed ...well duh! Then I think they thought I was just out for pain killers.. When I saw the Rheummy he told me what he thought I had before he even tested me, and I broke down crying in the office because finally someone believed me. It took 3 blood tests before I actually tested positive....sometimes you don't test positive. Preds got me set for awhile , then started Arava...5 years later still on Arava, but starting to have more flare-ups. Guess I need to get on the newer meds,but I am so tired of putting toxic stuff in my body. Anyway, hang in there and remember --you have to fight for your life .....I think some docs think deppression causes everything. And well i do not want anything to do with those docs I think they are mentally quacks. They think it causes pain and illness. Well so does RA. I do not think depression causes swelling. One doc said her sister had fibro and her sister swelled badly. I bet her sister has RA. Kara, new doctor needed QUICK! Can't believe somone could be that insensitive. Vaculitis and RA are closely related, chances are better for you having an autoimmune something than bone cancer. All the best to you :)[QUOTE=Jesse88]Gimpy, your gender question hit the mark. I was seen by several doctors, all but one male and it wasn't until I was sent to a female neuro at Wake Forest that I was finally diagnosed. She was the only one of about six doctors over several years who thought to do blood work for various things, including RA. It's also been my experience, although there are exceptions, that women doctors are more caring and empathetic overall. [/QUOTE]
Nope. Can't sit back and let male RD's take a bad rap just because of their gender. I really like my (male) RD, have always been listened to and taken seriously, it's never been suggested that anything was "just in my head" or that I should take anti-depressants. I was dx'd and began treatment within a few months. I know their are a lot of insensitive quacks out there. But I don' think it has to do with gender.
My doc i have now is male and i fired woman doc and woman RD. Both men and women have been insensitive. I do feel my regular doc is a sensitive and smart person all around. RD is my fourth will see in a short time. Think it is a guy doc said he was very good. Well i have the blood work this time so he has a one up on the last three. But yes i think sensitivity and mental over all well being of a doc is more important than gender. Thanks again for all your helpful comments. The anti-depressant was to help me sleep. My limbs being solidly numb and tingling throughout the night (every night) is what keeps me awake - these pill apparently slow nerve conduction.Cathy, who told you that RDs won't see patients unless they're on anti-depressents? I've been to 4 RDs and that's never been a criteria for a new patient. I've never been on anti depressents nor had them offered to me.
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I came back to this thread because of Cathy's comments. I didn't have time to respond the first time I saw it.
I have to agree with Lindy here. I've had RA for 14 years and have had three fairly long term RD's. Not a single one ever said anything like that to me. I've never heard anyone say that to be honest. To say that an RD won't see someone unless they are on an anti-depressant is about that the most rediculous thing I've ever heard. That's the type of RD I'd have no interest in seeing.
Cathy; I'm not saying you're rediculous.....just that who ever told you that is.
[QUOTE=Linncn]Nope. Can't sit back and let male RD's take a bad rap just because of their gender. I really like my (male) RD, have always been listened to and taken seriously, it's never been suggested that anything was "just in my head" or that I should take anti-depressants. I was dx'd and began treatment within a few months. I know their are a lot of insensitive quacks out there. But I don' think it has to do with gender.
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I'm glad you've had good experiences with male doctors, but as I've said, I was giving my opinion based on my past experiences. It never surprised me that the women doctors I saw took more time, asked more questions and generally gave me better care. Since women are the nurturing sex, it makes sense to me. That isn't to say that male doctors can't be as sensitive or empathetic, (they often are) just that they're not wired that way to the extent women are and in my experience, that nurturing part of a woman's nature has been the reason for my more positive experiences overall. As I also said earlier, there are exceptions, but I stand by my original opinion based on personal history.
Jesse...that's too bad that you've had such negative experiences with male doctors. I have one female dr and 2 male dr's. They are equally thorough, all of them are nice enough. But to tell the truth, the female is the least friendly of all three. She's all business. I'm not saying I think that's a bad thing. But I never thought any of that had to do with gender, I thought it had to do with the personality of the individual.
Hi Karen,
How frustrating and upsetting for you to have a doctor say that to you, with no ground to it. I know when I first had symptoms it took a year and a half for it to show up as RA and Lupus also in the joints. Have the doctors done an anti-DNA test for lupus? The pain is incredible in the joints. My Lupus is now in remission and has been for about 8 years now but RA is still active. I remember before diagnosis how very frustrating it was not to know the actual diagnosis.
Sounds like you have a good GP though so don't give up and keep at it, as I said it took a year and a half after symptoms and many tests for RA to show up in my tests. Hope the pain relief works till then. Hugs!
Kandy....Thanks for bringing back the topic at hand. Kara, my apologies starting to hijackdidn't mean to make you feel you were hijacking.....I think all discussions are valuable. hope it didn't come across that way.
Kandy