Do Doctors know anything?

[carla1986]

I have experienced joint pain for the past year and a half. I am a 22 yr old female. I HAVE ALSO spent the summers hiking in the northeast in prime Lyme disease territory. I am extremely fatigued. I have nausea half the time. I get regular exercise.  I eat very healthy.  My RA factor turned up positive.  They put me on methotrexate.  After 4 months I finally started to feel the benefits.  I decided to get a second opinion just in case.  The said that that they didn't believe that I had RA at all.  Because by that time I had no signs. (Because maybe the medicine was working!)

What I didn't realize is that I was having an extreme adverse reaction to the methotrexate.  This is why I was still feeling terrible. I was even having mental/mood changes, pain in my calf muscles, change in urination, vision changes, extreme muscle weakness, aside from all of the other regular side effects.  This new doctor not believing that I had RA took me off the methotrexate about 4 weeks ago.  I feel terrible, and I have been told I have an extremely high pain tolerance in the past.  I mean on a scale of 1-10 and 10 is getting hit by a garbage truck, I am a 7.  

Someone help me...

[txsilver]

I remember when I was being tested they took so much blood I felt woosy afterwards - any excuse for a milk shake :)  I am glad your next appointment is coming up soon.  Do let us know what you find out.  

[carla1986]

They haven't said anything about an MRI or x-ray.  I haven't ever gotten an MRI or x-ray since I was diagnosed or un-diagnosed for that matter.  Im still waiting on the tests.  It has been over a week and they still are not back yet.  (although they did draw 7 vials of blood and are testing for 13 things.)  Ill post my test results when I get them.  And I have an appointment on the Dec. 31st.  I will be sure to ask them about x-rays and MRI.

[txsilver]

Blood tests are indicators that help point in a direction, but they are not always accurate.  You can test positive for something you don't have and negative for something you do.  Did they see anything on x-rays?  When was your last set run?  Have you had an MRI or a bone and joint scan?  I am glad you are on top of this and having them check for lyme as sometimes infectious diseases have the same symptoms as inflammatory arthritis.  Keep us posted on how you are doing and what the doctor says.

[carla1986]

The methotrexate made me feel better except for the adverse reactions.  My joints felt much better.  I was able to do more activities.   The new doc believes that I have just fibromayalgia. Which I do not believe...at all.  But those symptoms just began after being on the methotrexate.They seem to be just saying that I have fibromayalgia without testing for everything.....
I cannot remember exactly what they just tested for.  But basically, they are doing a general bloodtest.  They are testing for lupus, because I already have hypothyroidism.  They are testing for Lyme Disease.  I specifically asked for the western blot.  They are testing for the RA factor, and inflammation.

[txsilver]

Trying to get a diagnosis is the worst part of this journey.  I am sorry you are suffering and can understand why you start to lose faith in doctors.  Autoimmune disorders are hard to diagnose.  Rheummys are generally regarded as among the best and brightest.  That being said, when you consider how many different kinds of AIs there are, it can be rough even with the best of the best.  My suggestion is that you get your lab results, educate yourself and take charge.  Ask questions.  Find a doctor in whom you have confidence and who listens to you and is interested in your case.  Once you find a doctor with whom you have rapport, you will be on the right track.
Regarding the methotrexate, did it make you feel better or worse?  How was it determined that you were having an adverse reaction to it?  If the new doc does not think you have RA, what does he/she think you have?  What tests are being run?