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How long did you suffer before getting a diagnosis
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An_215855 posted:
I have had sore joints (jaw, shoulders, elbows, wrists, hips, knees, ankles) for 2 months and have had extreme fatigue. My GP has said all along it is probably a connective tissue disorder, I went to the rheumatologist today, and had more bloodwork, more xrays and was put on prednisone. How long should expect before I might get a diagnosis. My blood tests are all negative, but I know something is not right. Am I expecting too much to get a diagnosis this quick? I just want to stop feeling like I'm crazy. Something changed 2 months ago and I'm not the same. Thanks for your help!
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DIYSTER responded:
I would have thought the Rheumatologist would have set up a follow up appointment to coincide with getting the test results back and reviewed. It would be at that 2nd apppointment that the Rheumatologist should provide you with a comprehensive evaluation, diagnosis and treatment recommendations.

Not all of us with auto-immune disorders have it all show up neatly in the tests so keep that in mind. The xrays may show what's happening, however. Is the Prednisone helping? It should be. I know it helped me tremendously with pain until I got on a biologic to get my RA under control.

Hang in there but remember you need to be your own advocate! Push for answers. Obviously something isn't right and you deserve proper care and treatment. Good luck and keep us posted!
 
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Sharbear50 replied to DIYSTER's response:
I have been to many different doctors and been prescribed many different medications, but now I am angry. All these yea, rs of pain and worthless doctors, I finally got a referral to a Rhuematologist because I insisted, now it is confirmed, I do have RA. Why none of the doctors I went to never listened is beyond me. Now I wonder how long I have had it. Doctors are so afraid of giving out meds for pain, they think you are just trying to get DRUGS...It just makes me sick.
 
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gevgpv responded:
I was referred by my regular doctor to a podiatrist over 4 years ago because of the pain in my feet. He would give me shots in the nerves that were supposed to help the pain. Didn't work!

Then I was tested for gout by a another doctor. Nope, didn't have gout but still had a lot of pain in my feet.

Finally earlier this yearthey knuckles in my hands started to swell and hurt. I went to a different doctor who actually did test me for RA. Finally I have been referred to a rheumatologist.

It seems that very few people get diagnosed quickly or correctly for RA. I usually know my test restults from the rheumatologist within a day or two.
 
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DIYSTER replied to gevgpv's response:
Sounds familiar, SharBear50 & gevgpv! It took me years to finally get diagnosed with RA. Oh, take Advil, oh its sciatica, oh, get a shot in the joint, on and on until I finally demanded they get to the bottom of it. Long story short, if I didn't push hard, I wonder if I would still be undiagnosed and perhaps in a wheelchair by now.

This is why I encourage everyone to be their own best advocate. Do your own research and insist on answers. Show up to appts with a list of what you want to discuss - don't leave anything to "chance".
 
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Kelly_RA replied to DIYSTER's response:
I complained to my doc for years I was always tired, sore, and achey. She ran every test she could think of and put me on thyroid meds. Helped a little with requiring less sleep but still hurting. Felt crazy. One day my knees swelled up so bad I couldn't walk. I had a doc appt that day and he took one look at me and said what's wrong??? I said I don't know but it's hurts everywhere and walking is very hard. I also requested to stand because getting up after sitting was near impossible. I actually took a hot bath thinking it might help and couldn't get out of the tub. I couldn't get to my feet! I was 34yo! Finally my dh took me to the ER. I was admitted for 3 days and sent home with wicked pain killers, a walker, a potty, follow up people coming to my house. So I followed up with their Rheumy. No thanks. Plaquenil was all he would give me. I found another place. Now taking MTX, medrol, and starting Cimzia Thursday. He gave me other stuff too but I'd like to add 1 drug at a time. I love/hate medrol. It takes the pain away but makes me grumpy and anxious and my chest tight. I already suffer from panic attacks.
 
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jhoch22 replied to Sharbear50's response:
That is exactly what I am dealing with right now. My doctors wouldn't listen to me at all and would just think I was crazy and prescribe antidepressants. Never works. So finally once I have been diagnosed and got insurance I changed doctors. To make a long story short, I have been on everything under the sun and the only relief is pain meds. My doctor refused me any and called me a liar. I am not a drug addict, just have been in pain for years and years. It really does make you sick. I haven't been to a Rheumy yet because it takes so long for you to get an appointment. December is my time. Only 3 months later.
 
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jhoch22 responded:
I definitely know how you feel. I think I have had RA for over 10 years and its was never a question to my doctors to even think to look. Now, after being diagnosed by blood work I have been researching a lot and find that most of the time it doesn't show up in bloodwork or xrays. I was told by one of the nurses at my doc's office that I was lucky for it to show up in my bloodwork because usually it doesn't. I have also had xrays and they have found nothing. I was also put on pred, and hated it but I have been on it before for asthma. But it is supposed to help some of the pain. I would try another Rheumy if you can. Your story sounds like mine, however, I have haven't been able to see a Rheumy yet due to so many patients in the area. 3 months wait for me. I wish you well and know that we are all here for you.
 
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honeypie129 responded:
Hi!

Only 2 months, and you're put on predisone - that's pretty fast. You must have a good Dr. I am sero negative as well, and I have been suffering for a long, long time, over 4 years since the first symptoms that scared me.
I have extremely dry mouth-so dry that at time I can't chew, can't swallow, the inside of my lips stick to my teeth, I'm always biting the inside of my cheeks, my lips get so dry and I get cracks in the corners of my mouth. I also have very dry eyes, and I see an opthamologist regularly. She told me about 2 years ago that I might have Sjogren's Syndrome; it's an auto immune DO that attacks the tears and saliva. Curiously, RA also attacks the tears and saliva, and when it does, You have RA and secondary Sjogren's. Provided, of course, it shows up in your blood. Then you have Generic DO. I'm about ready to give up on rheumatologists. They don't want to bother with you if you're sero negative.
I just went to yet another one, and I have signs this time-swollen joints, Baker's cysts, etc. STILL, I was told I do NOT have Sjogren's begause it didn't show up in my blood. She told me my dry mouth is from my medications. She didn't even give me a chance to tell her just how dry my mouth is. She didn't give me an examination. This was my first app't with her, and she double booked my time slot and told me she only had 10 minutes. Do these doctors have any idea how much we suffer? How anxious we are to meet with them, only to be discouraged time after time.

You mention that you know something is not right. You tell the doctor that, because that's your gage. We know our bodies. We don't need a degree for that.
 
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honeypie129 replied to jhoch22's response:
Like you, I am on pain meds. And, like you, I'm treated like a drug addict, which I'm not. But these meds are the only thing that helps. I wouldn't be able to get out of bed, or work.

Hey, I agree that some people do become addicted, but I'm not. I am dependent on the meds for pain relief, but I don't get high.
 
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DaisyDean responded:
I've just read your post, and the replies that you received. Sounds all too familiar. I've had pain as long as I can remember. Yes, even as a child I had back pain, joint pain, and swelling. Been to dozens of doctors .... each one with a new diagnosis. Most of them said they "thought I might have some type of rheumatoid disease" but, since there are 100 different rheumatoid diseases, they didn't know which one. I've heard RA, lupus, connective tissue disease, inflammation...you name it, they've diagnosed it. Meanwhile, no one seemed to know what to do to stop the pain. Recently, the treatment in vogue has been anti-depressants. Finally, I got stubborn with my PC and really insisted on some answers. I stopped the anti-depressant and told her I wanted to know what I have and won't take another pill until she finds out what is causing the pain. Well, she started by sending me to a neurologist, who ruled out neurological pain, but, said I have fibromyalgia (even though the symptoms are not the normal for fibro) and prescribed Lyrica. I felt worse. So, I stopped the Lyrica and got stubborn again. So, the PC sent me to a rheumtologist. Jackpot!!!! I ended up with a GOOD rheumatologist (they range from horrible to fantastic...you have to shop around). He is certain that it is rheumatoid, even though I don't have a positive RA factor...I do have elevated CRT. He says it doesn't matter which rheumatoid disease you have.... you treat them basically the same.
Don't give up. Keep trying different doctors until you find one that doesn't just dismiss your pain.... and one that will try different treatments until they find one that works. And, yes, sometimes you have to push your PC a little. You shouldn't have to just put up with the pain. They might not have all the anwers, but they should be willing to keep trying.
 
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elerae replied to honeypie129's response:
I was diagnosed with osteo in 2004, Fibro in 2005 and RA in 2006. I have been through so many meds I can't remember them all. None worked or I had allergic or severe reactions to them. I finally go to see a Rheumy early 2006. She was good, she did blood work, X-rays and tried several meds trying to find one that would work. She is who said I had RA. I started Humira in Oct. 2010.

I moved provinces in Jan. 2011. Was referred to a new rheumy, saw him in March. He gave me a quick exam, order blood work and xrays of hands. Had to wait until June for next appt. for results. I saw him for 5 minutes. He said I did not have RA. That my whole problem was Fibro and that he did not follow along with patients for that. It was up to my family Dr. So was my first Rheumy wrong or did this new one just not give a dam. He sure did not want to listen to me about my pain or where it was or give me any suggestions as to what I could do for it. He told me to stop the Humira as it was not needed and it was very toxic to my body.

My new family Dr. read the Rheumy's report and she agreed after she looked at blood work. Again my symptoms don't seem to matter. She just put it down to Fibro. It seems an easy out for them - a quick 5-10 minutes for the appt. and you are out the door. It is frustrating as hell. The Dr. at least ordered blood work to check a few things that I told her was due from my last Dr. I have lumps on my elbows - one large one that keeps growing - no one will tell me what it is and no one seems to even want to check it out.

My ankles have been swelling for years, been prescribed support stockings, they still swell. I take lazix - diarectic 80 mg a day and they still swell - sometimes halfway to my knee. Funny thing, not one Dr. has ever said they wanted to find out what was causing the swelling or the pain.

Some days I wish that I could give my Dr. my pain for even half a day before my appt. so he could know what I go through and what I am talking about when I see him. Maybe then I would get some respect and action. I know it is not a very Christian way to wish pain on anyone but I sure do get frustrated as I know all of you do as well.

God Bless, take care of yourself.
 
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HopeFig79 replied to elerae's response:
If I was you I would see a diff Rheumy!! I've had active RA for 2yrs now, and the crazy part is,that my blood work says that I don't have it. I have no markers of it,and my Rheumatiod Factor shows nothing! But he kept digging,and digging.. He was very sure that i did have i, so he kept ordering more,and more test..X-rays all show inflammation on my joints..So far xrays done have been of my feet,wrist,and hands.he also did sonograms on my wrist,knees,and my ankles,and they all show the inflammation,and extra liquid by those joints. Eventually he did find something..He did a Dna type test,and found RA in my dna, amoung a few other types of diseases in there...So now he is quit happy,because he finally found something he could go by. If I were you, don't give up! Go see another Rheumy..Also if you are in pain a lot because of it,maybe you can check out a Pain Specialist.. I see one also,and he was the one that actually thought I had RA to begin with...Hope this Helps you..GOOD LUCK!
 
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edmondsyd responded:
It took seven years for me to get properly diagnosed. I was tested for everything under the sun including Lyme's disease 3 times, diabetes, B12 deficiency, you name it. Seven years of excruciating nerve pain. It wasn't until all my joints and muscles started hurting all the time, that I was finally sent to a rheumatologist. He had me get RA bloodwork done, which came back positive...meaning the RA is already severe, if the test is positive. Neurologists are stupid. They don't look beyond their own specialty to see that the problem might be somewhere else. I am actually furious that so much damage was done to my body over the years, and I don't know what can be repaired, and what is permanent. They like to prescribe all sorts of psyche meds to cover up the pain though. I went off all of them, only to discover just how severe my joint pain was. The nerve pain was the only pain I could still feel through the haze of psyche meds. You are not crazy, you just have incompetent doctors. See a rheumatologist and keep having them test your blood every few months. Eventually it will show.
 
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VickyN responded:
I've have had the same experiance, just last month I have been getting extremely tired. My doc told me my test results
show the onset of arthritis. When I came back for a follow up and complained about my pain in my organs and being so tired he told me I was being a hypocondriac. Honestly I thougth I had cancer because of the pain in my pelvis and tail bone. So thanks everyone for sharing your story. I fell better knowing I'm not imagining syptoms.ps the inflammation effect my digestive system and my gut seems to swell up as well as my sinuses. ibyprohen seems the only thing so fair that helps.


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