Sunday, January 9, 2011

Thoughts for Improving the Time it Takes to Diagnose Rheumatoid Arthritis

***Before I give my thoughts on this subject- I have to give a caveat.  I was very, very fortunate when it came to my own diagnosis.  I had a wonderful nurse practitioner who clued in very quickly. I have read a LOT of diagnosis stories.  Each one serves to remind me how blessed I was in this situation.   Looking back in hindsight I had about 5 months of bursitis and tendinitis that we treated with cortisone injections- but usually one joint at a time and usually with an aggravating issue.  I had a shoulder, both wrists, a thumb and an elbow done.  I was also working full time in a very physically strenuous job for my day job and managing a restaurant/nightclub also full time and that includes bar tending, waiting tables, running food, stocking bars- you name it.  Oh- and I was taking 3 college classes a semester, trying to be a good wife and raising a teenager.  I was worn out to the point of exhaustion and burning through all cylinders and my stress level was through the roof.  I went in for my yearly checkup and my NP wanted to find out how I was doing with the bursitis/tendinitis issues.  I explained to her that those issues were cleared up but that for about a month when I woke up in the morning, my hands were like claws and it took several hours to get them usable and that my feet felt like I had run a marathon at night.  I assumed that it was because I was getting older and was running myself ragged.  I had already had a stint of pancreatitis and had my gall bladder removed back at the beginning of the year- and with all the other issues- I felt like I was falling apart.  That day when she ordered my standard blood tests that we did every year- she told me she was having my Rheumatoid Factor checked as well.  In total- even if we tie in the bursitis and tendinitis- it took less than 6 months from beginning to diagnosis.  If we take out the things we treated with cortisone- we are looking at less than 6 weeks.  Therefore- my opinion on this is from the viewpoint that everyone- EVERYONE- deserves a nurse practitioner or a doctor as reactive as mine was. ****

That caveat given- these are my suggestions for the medical community: 

1-  Stop and LISTEN to your patients.  I fully understand having back to back patients.  I understand that if you don't turn the rooms- you don't have a successful practice.  I worked in the dental field for 9 years so I have first hand experience with helping to build a thriving practice.  One thing I learned in that process, and one thing I appreciate from my diagnosing NP is that if you take time with your patient, if you really listen to what they are saying rather than dashing in, doing what needs done, ordering tests and dashing out- the visit will be much more productive.  As I was a dental assistant, it was my job to screen the patient.  I talked to them, I found out the issues, I did my best to make them feel at ease.  Even if the doctor is incredibly busy- a nurse can do the prescreening and take notes while they are doing the temp/blood pressure thing.  In fact, if they did a more thorough discussion of how we are doing- it would actually help the doctor focus on our problem areas and make it a more productive visit overall.  It would also serve to ease the jitters.  A LOT of people are afraid of the doctor's office.  A more thorough screening visit would help ease those fears. 

2- Let's let go of the RF test.  I was one of those whose RF was through the roof at the time of my diagnosis but there are too many people for whom this test is useless.  Not only are there false positives but there is a very large sero-negative RA community.  If you suspect RA- why not go straight for the Anti-CCP test?  The percentage of false positives is so much smaller and it really is a more definitive test for the disease. 

3- Please, please remember that not every patient is a drug seeker.  I have flat out refused narcotics unless I am post-op.  I don't even take aspirin, ibuprofen or Tylenol.  At this time I take exactly what my rheumatologist has prescribed, a daily multivitamin, vitamin D supplements and the occasional melotonin.  Nothing else.  Given the option I would do away with ALL of the drugs.  I also have a fairly high pain threshold and am, to my detriment, one of those that tries to push through.  When I say I am in pain- you can believe that it's because I am in severe pain.  So many patients talk about how their doctors just assume all they want is drugs.  It's just not the fact.  YES- there are those people out there- but we aren't all just looking for drugs.   In fact- when it comes to my fibromyalgia- if I could get a prescription for a monthly massage that insurance would cover- I would give up the flexeril that I take to get to sleep tomorrow.  How many patients go through months and months of doctor's appointments, tests etc because they are not believed when they talk about their pain?  It's that old "painting everyone with the same brush" thing.  It's not good for your patients and it's not good for a doctor's reputation to have a patient telling their friends and family how they went in because they were in horrific pain and were treated like an addict. 

4- Finally- Primary Care Physicians brush up on your chronic conditions and diseases.  I realize that you have a million and three different patients and a million and seven different conditions that you deal with.  If you are not really comfortable with the autoimmune stuff or anything particular specialty area- please refer us out sooner than later.  Weeks and weeks of pain before we actually get a diagnosis is just so unnecessary.

PATIENTS- this is for you!

First- be a partner with your physician.  Don't just let him or her dicate your treatment- ask questions,  get involved and work with them.  Doctors are people too.  If your doctor won't partner with you- perhaps they are not the right person to entrust with your care.  Ask yourself- if your child/mother/partner/spouse were gravely ill- would you want this person to treat them?  If not- they shouldn't be treating you either. 

Second- find sources that you can trust- and keep in mind that just because it's on the internet- it doesn't make it true or complete.  My sources that I really like for medical issues are the Mayo Clinic, John's Hopkins and Cleveland Clinic.  I am not a fan of WebMD, Wikipedia or other sources like it.  Get the information, read what you can and then go back to your doctor and ask as many questions as you need to understand your treatment options and make an informed decision.

Finally for you- if you do use the resources above- most of them have symptom checkers.  Do NOT make yourself crazy trying to figure out what you have before you have a diagnosis.  Stress can exacerbate many conditions and as you are making list of diseases you *might* have and are looking at all of the grave prognosis's- you are just adding to your stress. 

Being chronically ill basically sucks- but once you get your diagnosis and begin to understand your disease and your treatment options, you can take back the power over your disease and take back your life.

1 comment:

Kelly said...


Thanks for participating in the carnival. I loved your advice for docs and showing some responsibilty is on the patients too.

We were speaking of you the other night at the campus bookstore getting our list - its a B&N affiliate. Still don't know how you do it. :)