Terrible Doctor Experiences

Im 18 and i have been struggling for 6 months with growing symptoms from joint pain, spurs, locking and crunching everywhere. I only have 2 bone spurs one on left hand and in middle of chest. Its getting so bad i cant even sit bc the crunch in my neck is such a discomfort. Imagine in all joints bc now my waist is hurting and im scared for surgery soon and all this time im looking for a rheumatologist and i finally meet one and he tells me everything i have is NORMAL. And im stuck with shock not understanding. My blood test are all good but theres def something wrong with my bones im so scared its unbelievable and no one will help me. So i have decided to go gluten and diary free and do yoga to maybe help but im so terrified . i feel like these people are looking for advanced stages and not picking up whats now and what could be. I mean i already have spine pain and a bone spur on my chest. But its NORMAL...

23 Replies

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  • Bloods not showing ra yet here you are in agony darling. Keep plugging at the drs and don't give up with the drs,ask for a second opinion darling.xxxx

  • If your bloods don't have RA or OA, then you simply don't have it. Maybe time to look at other causes like Fibromyalgia?

  • But Ive heard that you can test negative for RA which can indicate OA in some cases bc it can't be tested with blood but with MRI. And i never heard of it but ill look into it and ask my docs.

  • That's simply not true. I'm seronegative (no or little indication on blood test results) but I definitely have RA.

  • Ditto! My doc diagnosed me a false negative & the specialist said I absolutely show signs of it. My hands are not pretty but I've seen far worse. I hated hearing the exercise speal & I will say this......sometimes as you exercise through the pain, the pain disappears for while. The brain floods the body with endorphins so the pain is gone for a spell. Relief is sweet! Hot showers before exercise would loosen me up a little just so I could even start. Yeah, it hurts at first & you break a sweat, but you feel good the rest of the day. Summer is my best time! The sun feels so good on my joints!

    Spring & winter, storms & cold, hurt like a MERF!

    I learned about false negative RFs in a pamphlet from the RA Foundation.

  • This isn't actually the case, as there is no single, definitive test for RA, so you can certainly be negative in the tests and still have the condition.

    Having said that, it isn't usual for ALL blood tests to show nothing, so it will make RA less likely, and they will have weighed this up with other factors, including symptoms. You mention pain in your spine, and this is not common (other than the neck) in RA.

    I think the important thing to do is to persist with speaking to the GP about other possible causes. You can tell something is going on in your body, and if RA is ruled out, you need them to tell you other possible causes or run more investigations. You could also ask for a 2nd opinion from another rheumatologist if you feel this would help.

    Kind regards

    Victoria

    (NRAS)

  • My insurance is bad so this rheumy was my only chance and i never really thought i had RA i think i have OA

  • Im actually postive in ANA and the rheumys excuse is that anyone could be that

  • Hi Lillynette. So sorry you are having such a bad time for someone so young, especially.The gluten, sugar, dairy free has definitely helped my symptoms. Sending you lotsa healing hugs ☕

  • Your blood tests are only part of the picture, as sometimes you can have normal results and still have an inflammatory disease. However, presumably the rheumatologist also asked you to describe your symptoms and looked at you? As it's the combination of these things that would lead the doctor to a diagnosis.

    At 18, with negative blood tests, no inflammation, no hot & tender joints or swelling it does sound as if you might be looking in the wrong area for an answer. Bone spurs can also be fairly normal. I would suggest you need to have a calm conversation with your general practictioner about your health concerns. There are all sorts of other things, like hypermobility or fibromyalgia that may need to be considered too. And you do also sound quite an anxious person, which may not be helping you.

    But thinking of things you can do to help yourself is also a great idea. Particularly exercise as weak muscles only exacerbates joint pain. As well as RA i have osteoarthritis in my knees and spine, and if I forget to exercise I can really feel the difference as it hurts 20 times more.

  • Hiya Lilynette. I'm sorry to hear you're no further towards knowing just what's going on. Truly I don't know what we can do further to help, we appear to be covering the same ground which must be very frustrating for you, not to say concerning that you still don't have answers. Have you considered contacting Healthunlocked American RA Warriors members? Thinking along the lines of they may have a better idea of how things work in the US, from your primary care doctor to insurance which I know you've had problems with. Even ask how you go about referral to a different Rheumy, push your primary to be more proactive & question which avenues are yet to be explored, more bloods etc. You see this forum is based in the UK & whilst we do have some members from the US you'll probably find being specifically an American site they may be able to help you where we can't in finding the right plan of attack. You can only ask & hope they have more ideas for you healthunlocked.com/ra-warriors

    Do your parents help at all, I don't recall you mentioning them? Could they or another responsible adult accompany you to your doctor visits if you feel you're not being listened to? You have said previously that they don't take you seriously, so maybe you'd benefit from some support, someone who knows how difficult things are becoming for you? Also maybe starting a symptom/pain diary may be useful for your doctor to read, reading how it all affects you could make her understand better. Or, if you can, make an appointment with another doctor in the Practice, a new pair of eyes may have a different opinion & choose to perform further tests.

    I wish you good luck in finding just what's going on.

  • Agreed! Excellent advise, nomoreheels!

  • As you are so young, at 18 years old, you could still be growing. My 18 year old son's friend grew so fast his body "couldn't keep up with it" (his words!) and he had some of the symptoms you describe.

    Just a guess obviously. He saw an orthopaedic surgeon rather than a rheumatologist, although he did not need surgery. Wishing you all the best and I hope you get this resolved very soon.

    Ally x

  • Hi Lilynette

    You have posted before to say your bloods were normal (but abnormal results are only an indicator and cannot confirm or rule out RA). BUT you have never posted to say what the results of your ultrasound, MRI, X-rays were. Have you had these tests done? They can confirm RA conclusively. But they cannot rule it out. However, rest assured that if you have RA something will show up on ultrasound. You can get ultrasound done yourself and it is quite cheap (well, at least you can in the UK).

  • Aww sweetie - That is SO scary. It's hard even when you get older, but it has to be terrifying when you are only 18. I agree with the others - keep after them and let them know how much you hurt, how scared you are and so on. I know I have heard people say that NRAS here has resources - people you can talk to - I'm not sure of that part, but maybe they can help you...

  • Keep pushing the doctors. A year ago, when my symptoms flared over night, hands and wrists looked like clubs. My RA blood work did not show RA. But I was fortunate to have a very astute family doctor who said he thought I had RA, started me on predisone, and referred me to a rheumatologist who confirmed his diagnosis. Some months later my blood work was positive for RA. You may have RA or you may have some other inflammatory process, but don't give up. Pain is not normal. Get that second opinion if at all possible.

  • I understand! I've been diagnosed a false negative. Then a year ago a positive on Rheumatoid factor on blood work. Go to RA specialist & bloodwork shows negative on RF but positive for lupus,a first! I'm just as confused as the doctors! But unfortunately the specialists don't think they can help since I have cirrhosis of the liver from life long hepatitis. The medicines they treat with aren't liver friendly & most cause liver problems.

    I know you're hurting, but hang in there! Maybe one of the doctors will be up for a challenge & can find you some relief & a diagnosis. Hugs!

  • Have you had an MRI done? The rheumatologist I went to didn't do alot for me either. But tell me my tests were also all negative and normal. Although I hurt from my shoulders to my feet , including my hands and lower back. Good luck Jeff. D. Quinn

  • I need an MRI yes. But my insurance is bad so its so difficult to get one

  • Lily, I've run into the same problem with doctors like you and also get the feeling they're ignoring the obvious. My lower back has been given me issue's as well as my right leg.,I've told my GP that I'm getting warm to hot sensations down my leg and he did nothing to see what was going on. I'm still having the same problem with both. I think it's my siatica nerve .

  • Hi Lily

    You say this rheumatologist didn't think you had RA but it's not solely based on bloods. Do you have the classic symptoms; morning stiffness for meow than an hour, visible swelling, red and hot joints and sore when they are gently squeezed? Rheumatologists tend not to be involved when people have osteoarthritis.

    Bone spurs alone are nothing too major, so please don't panic. Also, some people are more crackly and crunchy than others. How active are you? Has this changed?

    I am also wondering how much support you get from your parents. This is understandably worrying for you.

  • Do you know who i could see for OA symtoms? And my parents are supportive it's just they tend to believe anything a doc says even when i stress out what i go through. And the main problem with my bone spurs is that their causing pain.

  • My Rheumy doesn't concern herself with my OA & asks my GP to who I must say does a good job & my inflammation & pain is well controlled. I'm about to start another med for neuro problems & she's arranged for me to see her at regular intervals for reviews whilst titering up.

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