Friday, June 8, 2012


Dear Reader - If you have followed my blog for awhile, you will know I have struggled with a mystery illness for over a year now.  In early January, I detailed my mystery illness struggle (Catch up Here).  A couple of months ago I reached out to a former coworker who also has an autoimmune disorder to see who her doctor was.  She gladly gave me her doctor's name.  It then took me another month to put on my "big girl pants" and make an appointment.  You may ask why it took so long.  Making a doctor's appointment may seem like a very easy thing to do.  However, there comes a point where you can no longer deal with the emotional roller coaster of hope (surely this doctor will be able to help) to devastation when they shrug their shoulders and send you to the next specialist.

I went to see the new rheumatologist on May 24.  I took with me all the copies of my medical records, organized by the specialist that had ordered each test.  It was a considerable stack.  My new doctor patiently listened to my tale of woe, then took my records while I changed for an examination.  After looking over my records and examining me, she came up with a diagnosis.  She said, "You have CREST, it's right here," as she pointed to the tests my hematologist ran last July. She also said that I have fibromyalgia.  I was already being treated for the fibromyalgia, with the medications my GP "threw against the wall" last August (after my first rheumatologist told me he didn't have a magic potion for me).

One would think being diagnosed with an autoimmune and fibromyalgia  would be a huge blow.  This diagnosis felt like a massive weight was lifted off my shoulders.  My husband even commented later that day that I looked like the weight of the world had been lifted from me.  My new doctor ordered several new lab tests to get baselines.  This included a lung function test, as pulmonary hypertension is a concern for people with CREST.  The best part of my appointment was having a doctor tell me it was her job to help me manage my illness.  Finally a teammate with an MD to her name!

Yesterday I had my two week follow up.  We went over test results (including a confirmation on my CREST) and came up with a game plan.  I will see her again in four months, unless I need to see her earlier.  It was good to find out that my liver and kidneys are functioning normally (kidneys can be a concern as well for people with CREST).  It's good to finally have answers.

As blessed as I feel to finally have my answers, I must tell you I also feel rage, mainly at my first rheumatologist.  He had the same information presented to him.  He said he could do nothing for me.  When I begged for his help, I got a smart alec answer, which was highly unprofessional.  I wonder what would have happened if I had been given the help I needed at the end of August instead of sarcasm.

I have to believe that everything happens for a reason and that there is a purpose in everything.  I do not know at this point what the purpose of this trial is.  I hope in time to figure it out. 

I do know one thing, Dear Reader:  You have to be persistent in your medical care.  I have found there are good doctors out there, who will help you, and there are also doctors out there that really shouldn't be practicing.  If you run into the latter, don't give up.  There is a lot of information out there (on the internet).  Do research.  Talk to people and see who their doctors are.  Dr. House may be a fictional doctor, but doctors with his talents do exist in reality, as well.

Until Tomorrow - Melissa


  1. I'm so glad that you got answers and found a competent doctor! I can understand your anger at the first doctor -- I've run into my share of snarky/clueless ones, and I always wonder how the heck they got into med school!

    One thing you could do is rate both doctors on sites like Maybe you can help someone who's going through something similar! I tell everyone who'll listen about the amazing doctor I found for my shoulder, but also about the first physical therapist I went to who made me worse.

  2. That is a great recommendation. I should do that. I understand some people may be smart enough to be doctors (hence get into med school). However, if you aren't in it to help people, get into research and stop seeing patients.