Many rheumatic diseases have symptoms that overlap, and blood tests are rarely conclusive. While there are no data to show which rheumatic diseases are most commonly misdiagnosed, here are some that are well-known for being tricky to detect. Doctors often arrive at these diagnoses by ruling out many other possibilities first.
• SJÖGREN’S SYNDROME
What it is: An autoimmune disease that attacks the body’s moisture-producing glands. The most distinctive features of Sjögren’s syndrome are dry eyes and dry mouth, but this condition can affect the entire body, damaging organs such as the liver, lungs, kidneys and stomach. According to the Sjögren’s Syndrome Foundation, on average, it takes patients up to seven years to receive a diagnosis of Sjögren’s.
Mistaken for: fibromyalgia, chronic fatigue syndrome, allergic conjunctivitis (eye allergies), medication side effects, blepharitis (inflammation of the eyelash follicles), xerophthalmia (dry eyes caused by decreased tear production)
• LUPUS
What it is: A disease in which the body attacks its own joints, skin, tendons and vital organs. Lupus is episodic, meaning that symptoms will flare and then disappear. Doctors have dubbed lupus “The Great Imitator” because of its ability to look like so many other diseases.
Mistaken for: RA, scleroderma, rosacea, multiple sclerosis, Lyme disease, depression, vasculitis, myositis (inflammation of muscle tissue), endocarditis (inflammation of the sac around the heart), fibromyalgia, meningitis
• FIBROMYALGIA
What it is: A clinical syndrome characterized by a mix of symptoms which may include persistent, widespread pain, muscle spasms, mood disturbance, fatigue, insomnia, problems with memory and concentration and irritable bowel syndrome
Mistaken for: RA, osteoarthritis (OA), Lyme disease, chronic fatigue syndrome, hypothyroidism, depression, lupus, neuropathy, sciatica, anemia
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Average Time To Diagnosis
In many rheumatic diseases, symptoms develop gradually, and the full clinical picture can only be appreciated over time.
Here are the average amounts of time it takes doctors to make a diagnosis from the time symptoms first appear:
Rheumatoid arthritis 6 to 9 months
Juvenile arthritis 5 months
Fibromyalgia 2 to 5 years
Sjögren’s syndrome 3 to 7 years
Ankylosing spondylitis 6 to 9 years
* Compiled from recent, published studies and patient surveys
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I just looked back on here to see things that have been added and noticed your question to me. For the past four years, I had been told that it was because of the pain meds and when I was able to get off of them the numbers would go back down. However, when I talked to my pain mgmt doctor he actually got angry (not at me) and said that he has heard that from many patients the fact that they were told it was from their pain meds. The only way it would've been from the pain meds is if they contained tylenol in them and if a person is taking a large dose. Since the oxycontin and ms contin have no tylenol in them they aren't causing my liver problems. Once I finally had a doctor give me this information and was able to get one to schedule further liver testing, etc., I asked the liver specialist about this. He also agreed that it had nothing to do with my pain med. However, the two main culprits were the prednisone and methotrexate which seem to be the primary go-to meds once someone is diagnosed with RA. I also found out the the steroid shots or prednisone shots that I had been receiving are actually not to be given more than about 3 in a year. I was getting one just about every 1 1/2 to 2 months because of the inflammation and flare-ups. I was on the methotrexate since my diagnosis 8 years ago and immediately upon my RA doctor hearing about my liver disease took me off of it cold turkey with absolutely no hesitation. Him doing that really made me angry because to me this meant that they know this is a huge problem with the methotrexate and yet I have never heard anything about this while I was on it from any of my RA drs that I have had over the years. In addition, immediately at that time to avoid prednisone at all costs as well.
I hope this has helped you and feel free to email me at my actual email address with any further questions. My goal here isn't to scare you but to hopefully provide people with information that I wasn't given over the years.
Angie
angiehern@yahoo.com
I have RA for about a year now but I only got diagnosed about 6 months ago. I've been on Ms contin for 6 months and not sure how long I will be on them. Is the pain medications the reason you liver is damaged? Or is it from the a disease? I'm young and scared that these medications will kill me before my time. I take a Enbrel injection once a week and plaquenil 2x a day, also percacet for break through pain. I do feel like so far the Enbrel is working. I haven't had a big flare up yet. I get some inflammation and pain when I over do it.
Read your comments. I have RA since 1998. It had affected both my elbow joints. I am managing my heath by doing pranayam for 2 hrs everyday. Doing Sudarshan kriya meditation by Art of living Foundation, reading positive books, being with winners or rather fighters in life. Recently I have started taking dancing classes - an innovative way to exercise as I was getting bored of yoga. I am only taking calcium supplements and Glusomanine tablets everyday. Apart from it I am on no medication and believe me my disease is well in control. I make it a point of helping somebody everyday which gives me contentment and happiness. Rest is great. Anybody needs genuine help contact me at my email id mentioned above.
Thanks,
Parul
Read your comments.I have RA since 1998.It had affected both my elbow joints.I am managing my heath by doin pranayam for 2 hrs everyday.Doing Sudarshan kriya meditation by Art of living Foundation,reading positive books,being with winners or rather fighters in life.Recently i have started learning dancing an innovative way to exercise as i was getting bored of yoga.I am taking calcium supplements and Glusomanine tablets everyday.Apart from it i am on no medication and believe me my disease has not progressed .I make it a point of helping somebody everyday which gives me contentment and happiness.Rest is great.Anybody needs genuine help contact me at my email id
To Donna Marie: Yes it is possible to have several diagnoses. My RA was actually triggered from a MRSA infection back in 1998 because it reduced my immune system, etc. In addition, several of the conditions you mentioned often go hand-in-hand. So dont' automatically think you've been misdiagnosed. I have been diagnosed with several of these myself. The problem is none of these conditions, other than the MRSA as it is simply an infection, are exactly "curable." The trick is to successfully treat the symptoms.
Regarding some of you who have been on multiple treatments such as remicade and others. I have been on several treatments as well. First of all, I would like to say GET OFF OF PREDNISONE as soon as possible. It causes more damage than good especially if you've been on it for a significant amount of time. Prednisone is just to be used on an occasional basis and not as a long term treatment. The only treatment that I found that helped in the slightest was a combination of methotrexate and rituxin. It hasn't gotten my at 100% (I've given up on that) but it has helped and you only need an infusion periodically. You get one and then 2 weeks later you get another one. After that, it might be anywhere from 3 months to a year later. Like I said it hasn't made a huge difference but compared to others I've tried it has helped. The other symptoms have been kept at bay with pain meds. I know a lot of people don't like taking them but when you have certain conditions, you simply have no alternative. I have had the best luck with Oxycontin. I am on a pretty high dose but only have to take it 2 times a day. With it I can function. Don't be afraid of it because of things you might've heard, etc., as long as it is taken correctly, there isn't a problem. Try to get a good pain managment specialist, they will do wonders for you and get you back to living.
As I have said, I have been diagnosed with multiple conditions since being diagnosed with RA. Just be sure to have your doctor watch you're numbers, especially liver enzymes, very closely. Mine were elevated (only about twice the normal) for 4 years but kept getting told it was no big deal and that it was because of my meds, etc. I finally was able to get a doctor to agree with me in wanting to get them checked (it was actually my pain management doctor who told me it wasn't because of my pain meds, etc., that the numbers were elevated.) I saw a liver doctor and was able to get a biopsy done. Unfortunately, because of the RA and various treatments, my liver is over 1/2 "dead." I kept being told that the numbers were high enough to worry about. My liver specialist told me that it didn't matter exactly what the elevated numbers were but instead the important thing was that they were consistently elevated for 4 years.
My point in telling you all of this is that if you think something is wrong, insist on tests being done. Don't just take what they say as law. Nobody knows your body better than you. I hope that I have helped someone on here with this information. I would be more than happy to chat with anyone that might need to. Obviously I'm not a specialist, etc., except that I have been dealing with this for over 10 years and have gone through a bunch of crap. If I can save someone from going through what I have with this, I'd be more than happy.
Angie
angiehern@yahoo.com
when you look at how Mito affects the body, it may surprise you...it may look famiiar & worth knowing about it to bring it up with your provider.
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