Oklahoma Mastocytosis Society - Our Stories






My name is Dr. K Roberts, Ph.D.  I was diagnosed with Mastocytosis.  I am an RN, serving as an Associate Professor at the Research College of Nursing.  My strengths are my medical knowledge base, writing skills, and research background.  The following is my story

The Rebirth of K. Roberts

My story is similar to many because it took years of visiting unbelieving and doubting doctors before I accidentally found a pair of doctors that gave me back my life.  As I think back, I have had symptoms of Mastocytosis for most of my life with concurrent diagnoses of irritable bowel syndrome, spastic colon, vertigo of unknown origin, etc.  Two years after the birth of my second son I began experiencing severe fatigue, mental fog, diarrhea, hypertension, fever, flushing, and a myriad of other symptoms.  After multiple visits to my primary care physician over a two year period and receiving subsequent treatment for the symptoms with lomotil, , Imodium, antivert, and valium I became so debilitated I could barely function.

As I tried to continue working full time by telling myself it was just allergies and my overreaction to them, my colleagues saw a distinct decline in my physical state and insisted I seek further help.  The present health care system does not make obtaining this help easy because it took a shouting march with my primary care physician to get a referral to an allergist.  I truly lucked out (or with divine intervention) picked out a name from a list of unknown allergists that were on my list of preferred physicians.  When I went to visit him, I related my symptoms and my heart sank as he said he would test me for allergies but doubted I had any.. He did say he thought I had Mastocytosis and the test would help rule out any real allergies I had.  Well, he was right and the entire allergy tests were negative.  Then he went on to explain to me (a nurse with 20 years of experience) that I probably had this disease I had never heard of.

He referred me to a doctor at local university medical center that specialized in Mastocytosis.  Of course this physician was not on the list and I had to play the referral game before I could see him.  First, I had to be seen by a gastroenterologist that was on my preferred list.  I went thru the motions, let him diagnosed me with irritable bowel syndrome and suggest a diet that contained all the things that triggered my attacks (even though I explained this to him).  When he was finished I insisted on a stomach and small bowel biopsy, which the allergist said, would be diagnostic if done properly (I had a small bowel biopsy 8 years earlier but it was only testing for celiac sprue which returned negative).  Again, I insisted on this particular biopsy and he agreed to talk to the specialist at the medical center before doing the biopsy.  Two days later he referred me to the specialist to make sure the biopsy was one correctly.

It took two months to get in to see the specialist and another month to schedule the biopsy but it was worth the wait-I was diagnosed with Mastocytosis.  A combination of antihistamines, plenty of Imodium and a patient 18-month wait was what it took to get my Mastocytosis under control and return to a fairly normal life.  When I met my former primary physician after my diagnosis of Mastocytosis was confirmed he stated that I couldn't have it because is was such a rare disease.  Well, someone has to have it or it wouldn't exist but he couldn't believe that I could be one of those rare persons.

It took assertiveness and a supportive husband to dog the medical system until my diagnosis was made.  I had two ankh tie tacks made for the two physicians that helped me obtain my diagnosis.  The ankh is symbol that means life and that is exactly what these men gave back to me -- my life.  I have good days and unpredictable bad days but the good days outnumber the bad.  I have recently completed my Ph.D, which would never have been possible without proper treatment.  Again, I thank these wonderful physicians that thought outside the box and believed I could be one of the rare individuals that have Mastocytosis.  I owe my currently productive life to them and urge others to challenge the health care system to get the diagnostic test and treatment they need to give them back their lives.



copyright � Oklahoma Mastocystosis Society
All rights reserved