For 20 years, Frances Muller’s rheumatoid arthritis (RA) was misdiagnosed.
A neurologist told her that the pain in her hands was carpal tunnel syndrome. An internist told her that the all-over aches that struck about four times a year were the flu. An orthopaedic surgeon told her she had bursitis in both shoulders.
“None of my symptoms made any sense,” and none of the treatments helped, says Muller, who lives in Scottsdale, Ariz.
An orthopaedic surgeon who ordered an X-ray of her pelvis finally figured it out – after 13 previous doctors did not. He said there was no way she could have so much damage to her hips and not have RA.
Misdiagnosis is one of the most common medical errors, occurring about 15 percent of the time, according to autopsy studies. And it can have dire consequences, leading to unnecessary or delayed treatments and physical and emotional suffering.
In rheumatology, where symptoms and diseases frequently overlap, experts stress that even scrupulous, experienced and well-intentioned physicians can miss important clues, and they encourage patients to be vigilant, savvy partners in their own care.
“For many rheumatic diseases, there’s no gold standard [for diagnosis],” says Don L. Goldenberg, MD, chief of rheumatology at Newton-Wellesley Hospital in Massachusetts. “You don’t biopsy it. There aren’t a lot of laboratory tests. That’s where the art of medicine comes in, more than the science.
“If patients are concerned, they have the right [to], and certainly should, get a second opinion,” Dr. Goldenberg adds.
To help you decide when it’s time to push for more answers or to seek a second opinion, here are seven red flags that your doctor may have arrived at the wrong conclusion about your condition.
However, the final set of blood tests had shown that I was anemic, which had never happened in my life, so the first doctor repeated the hematology tests and the results were worse, so she sent me to the hospital to see if I was bleeding internally. I had CAT scans, MRI, endoscopy, colonoscopy, bone marrow, etc. They decided I had lupus, put me on prednisone and iron and sent me to a rehab facility. By this time I was pale as a ghost and so weak I was in a wheel chair. Even with the meds the lab tests showed the anemia continued to worsen. Then I got a phone call from a chiropractor I knew who practiced an Applied Kinesiology technique Total Body Modification. She said TBM had a protocol for lupus and I said to come ASAP. It only took a few minutes for her to ascertain that I indeed had an auto-immune condition - I was allergic to my red blood cells and was destroying them. Then she did a few adjustments to correct the condition and I felt better right away but dismissed my feelings as wishful thinking. However, the results of the next morning's weekly blood tests, instead of showing the continuing decline, overnight were higher than 2 months previously.(I didn't know this till the end of the week) But a friend who visited me that next morning thought I was wearing make-up because all the color had come back to my face. The best part was that the physical therapist said, "You seem to be much stronger today. I think you can use the walker instead of the wheel chair" They cut the meds dose in half but within a month they were discontinued because I was no longer anemic. But the inflammation had burned up what little cartilage was left in my knees and now I have Titanium knees.
I was supposed to have them @ age 50 when I had a serious accident, but I was saved by a massage therapist. This happened again at age 65. Don't ask how old I am now! I never took meds all those years. I cut out sugar years ago, used homeopathic remedies and herbs, Epsom Salt baths and more. I think that if I had been taking meds for years instead of a few months it would have taken much longer for me to recover from the lupus. Taking anti-inflammatories is like pouring water on a fire - if you keep doing it eventually the structure will collapse.
I'm writing to share a hopeful new direction called psychoneuroimmunology (PNI), which is at a few places like UCLA Med, Rochester, Stanford, etc. It is apparently true that our immune system responds to our emotional happiness .... that we can have a positive effect on the immune system with laughter, that witnessing, receiving, or giving kindness also has a positive effect....
Changing our lives, relations, jobs, and inner thoughts, are much harder than taking pills... but it does turn out to be one way we can help the immune system... its different for each of us, but it was good to discover this.
For years I have endured body pain like all of you. Hands, knees, my feet are stiff-tingly-swell, my back is a mess. I can barely walk and have been told I have spinal stenosis & spinal arthritis. Last week I got my back shots and the doctor said "you really need a surgeon to clean the arthritis out of your spine". If this procedure was a sure bet I would dash forward. All I can see is a wheel chair in my future and pain, pain, pain. Does anyone have a sucessful back story?
I've lost track of how many doctors and tests I've had. I've left appointments in tears, crying all the way home, either because a doctor said "your tests are normal--you just need to lose weight" or telling me it's all in my head.
I don't doubt my current diagnoses of Chronic Fatigue Syndrome and Fibromyalgia (15 yrs) as well as Chronic Daily Headache and Complex Migraine Disease (6yrs). But it wasn't until I took some info to my doc, I call her Dr. Awesome, and asked her if I could have psoriatic arthritis.
My xray results show that it is a strong likelihood (as well as ankylosing spondylitis), and I'm waiting to see (yet another) rheumatologist. I'm not happy but reading the symptoms from a reputable source, it all clicked. How long have I had it? Who knows. But I am positive that had one of the specialists I've seen took just a bit more time with me it might have been dagnosed sooner, with less damage to my back and hips.
It's a shame we have to work so hard when we feel our worst, and hire and fire doctors when they fail us. But I don't let doctors push me around anymore.
Great article, thank you!
until success is achieved.
I am a 74 year old retired Pharmacist who began with a bout of Gouty Arthritis in my left big toe. My PCP,after some blood tests decided I had the beginnings of Rheumatoid Arthritis. He started me on Prednisone oral tablets, Methotrexate and because I had a back pain issue, Darvon Compound-65 for control of pain. These combinations worked to some extent for 20 + years. As I aged the pain level and RA flair-ups began to take their toll. To complicate medical issues I experienced an episode of chest pain that precipitated in a quadruple by-pass heart surgery. I was lucky in that didn't add any medications to my regimen.
My RA flair-ups began more frequently and with vigor moving from an elbow to knee to wrist to hand to back and then all of the above repeatedly. I summoned the help of a Rheumatologist who started me on a new oral medication Arava 25mg. Within a week I had a reaction to Arava that resembled second degree burns on my lower legs. I stopped immediately taking the Arava and we began treating my lower legs. We cleared these up and she started me on Enbrel injections twice a week. My insurance initially paid for Enbrel at $600.00 per month. I changed employment and the insurance did not cover Enbrel. Enbrel brought my RA under total control. I could not afford the cost of Enbrel so the Rheumatologist and I reverted back to Methotrexate, Folic Acid, Vitamin D, etc. This seemed to manage my RA except for those #*^%# flair-ups. We then added Medrol Dosepacks (Methylprednisilone) to get my flair-ups under control.
My back kept raising its ugly head and then my Orthopedic Surgeon decided I had a Stenosis of the spine that required surgery to remove burrs in my spinal canal. I continued with chronic back and lower leg pain. I started with Epidural injections to help control the pain. These were somewhat helpful. I continued to have chronic lower back pain radiating down my legs. My Orthopedic surgeon decided that I needed Lamenectomy surgery at L-3, L-4 & L-5 requiring freezing these vertrabrae and placing a bone graft on each side of my spinal cord to limit flexibility in my back. I continued to have chronic low back pain radiating down to my legs along with muscle pain. During all this my RA continued to have periodic flair-ups. I started falling down as my right knee would collapse without warning of any kind. Both my Rheumatologist and Orthopedic surgeon decided I needed a Neurology consult as I did not have any appropriate joint reflexes. The Neurologist performed an EMG test or Electromyleogram to test the muscle response of arms and legs. The diagnosis identified was Polymyositis which is a disease of the muscles that affects the shoulder, neck, arms, hands, legs. It can affect the ability to swallow.
I consulted with my Pharmacist during all phases of medication changes.
So much for my pity party.
Many PCP's have the knowledge and ability to treat RA and related diseases. Consult your physician whether a PCP, Rheumatologist, Neurologist, Orthopedist for appropriate treatment. Medicine is an art applied by medical practioners. Consult your Pharmacist for any drug issue. Our bodies are a very complicated system. Appropriate treatment for any disease requires a specialized treatment for your individual medical problem. We are all different and require different solutions.
Most of all Don't Give Up!
Scientific evidence supports the conclusion that underlying messages have significant impacts we are not always aware of. The more we repeat the false message that medicine is not a science we may actually be reinforcing patients' distrust of medical science, which is a serious problem in medicine just as misdiagnoses are.
A better statement and easy change would be to say, medicine IS a science, but practicing medicine is still an art.
"why did it take you a year to finally decide to take blood work?' She said, well once I thought you had the flu, and just some inflamation. Well! three days later she personally called me with an apology and said she would get me an appointment with a rheumatologist right away, one of the best in North Carolina that normally takes three months to get an appointment with. My RA blood panel had come back with a 487 count. Normal is 0 to 20. I was in the rheumatologist office two days later. Spent over 4 hours there getting a full body bone density test, x-rays, and two meetings with the doctor. He has me on 8 methatrexates a week, folic acid daily, 50,000 units of vitamin D every two weeks, started out on 6 prednisone a day, now off of that except if I have a flare up, and I can finally function almost normally, the things I have learned is that you have to be persistant with your doctor (which I wasn't to begin with) and you have to control the RA and not let it control you, even though some days it is really hard. What my RA doc explained to me is that, there is no cure but it can be managed and with the methatrexate, it is to keep my joints from becoming distorted and I have to have blood work done every 8 weeks to make sure the kidneys, liver, etc. is doing ok, I feel I have been blessed to get to the right specialist. Also to any of you that may be interested, there is a great magazine that I have a subscription to that has answered a lot of questions and concerns that I have had, it is called Arthritis Today. I got my first copy free at the RA doctors office, loved it and subscribed to it that same day. You can visit their website at WWW.ARTHRITISTODAY.ORG or at 1-800-283-7800 to subscribe. Also not long after I was diag. with RA, I was in Barnes and Noble and bought the biography of the movie actress Kathleen Turner that she wrote on her being misdiagnosed with her RA. She is now a great advocate with the Arthritis Foundation. That was a great book and worth the read. It makes you feel that you are not alone in this terrible ride. Best of luck to all of you.
So far I'm just experiencing side effects from my perscriptions.
So sometime even a second oppenion needs to be checked out.
I have been troubled with joint pain for over 50 years. I am now 79, yes I expect to have some aches & pain, but when doctors & nurses ask me about my pain 1 to 10. I tell them 7- 8, they tell they do not see enough to indicate I have that much pain??
Which leaves me thinking "I am nut"
The Doctors seem to be in medicine now for the money rather than helping people.
The wonderful surgeon that someone told you about, who exactly gave you the name? Reading your comments reminded me of when I was sent by DES to their doctor to determine if I was disabled or not. My doctors and yes there were a few, all said the same thing and had the same diagnosis but that wasn't good enough so they sent me to their own contracted doctor. My mother went with me so I had a witness. The doctor did absolutely nothing, didn't touch me or anything. I was in and out of his office in about two minutes. The diagnosis he was supposed to confirm was fibromyalgia. His report said I was fine. I challenged his diagnosis because I had other reports that disagreed and I contacted someone high up the chain and told them that their doctor did nothing as far as an examination and I had a witness to that fact. They apologized and accepted my medical doctors diagnosis (there were three) and I had to contact my U.S. Senator to get help with the remaining part of getting disability from social security. Not only have you been removed from being able to get medical help at no charge but you can't even get a correct diagnosis. The pin you had inserted may have been a part of a test that checked your nerve responses. I had it done for carpal tunnel syndrome and the doctor inserted several pins and then turned on electrical charges. I screamed too because it was more than just painful. Don't give up, you need to know what happened and what your true diagnosis is. Keep trying and you will find a decent and honest doctor.
Even at that, my family was concerned because I was spending every weekend in bed so exhausted and aching after somehow getting through a 5-day week. When my husband mentioned this to my family physician, he had another rheumatoid factor taken, only to find that it was greatly elevated. Although I had been seeing a rheumatologist out of state for 4 years, he continued to diagnose my condition as fibromyalgia and evidently didn't take the needed blood tests. One week after returning from this doctor, a local rheumatologist spent 2 1/2 hours questioning me and taking tests. Aha, finally a diagnosis of RA. At this stage of the game, I was given a poor prognosis.
Strangely enough, when I had been at the other doctor's office only a week before, he told me that I was in no distress and didn't need to see him for another 6-9 months. Six months later, I returned to that doctor for a second opinion concerning the medications I was taking and to make a point. He had the nerve to tell me that he didn't realize that I was in so much pain because I didn't moan and groan about my pain. That isn't my MO, even today, after going through just about every DMARD around and three anti-T Alpha medications.
I had a wonderful doctor at Vanderbilt University for 7 years who was very efficient and even suggested that I go into a Phase 4 Blind Study for the present drug known as Remicade. After her death, I started seeing a new local rheumatologist. Today I am blessed to have had a rheumatologist for the past 4 years who listens to me and tries to keep me on a regimen of medications that lessen the joint destruction and discomforts of the disease. It took me 11 years to get to that point.
I am taking colchicine,0.6 mg, and allopurinol, 100 mg.,plus prednisone,10mg, but it does nothing to alleviate symptoms.
Any guesses?
So far I have 2 knee replacements, 1 shoulder replaced, (need the other done, but trying to hold off), arthritis cut out of my hand and carpel tunnel surgery. I suffer in pain and swelling every day, not always in the same place. I have seen several Rheumatologists and each says; "There is nothing I can do for you." I only take percocet every 4 hrs. for pain. I also have 3 stents and am on plavix etc. for my heart.
I also take Nexium for my stomach. I know I am limited as to what medicines I can mix with all these, but I just want to hear from someone that there is something else I can do. I even drag myself into work around 11 O"clock each day. Takes 4 hrs. to get going everyday! I really need a good doctor with dome good ideas on how to treat me and give me some relief.
I am taking colchicine,0.6 mg, and allopurinol, 100 mg., but it does nothing to alleviate symptoms.
Any guesses?
He treated this disease and now six years have passed, Lupus is in remission and I lead a completely normal and painless life. These are very sneaky diseases, they hide, in order to strike.
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