Hello Everyone!  

I am new to this forum so would like to introduce myself.  My name is Terry and I reside in Edmond, OK.  

After almost seven years of bizarre symptoms and perplexed doctors I finally found a specialist here in OKC that finally confirmed my suspicions.  His name is Philip Miner, a G.I. specialist, and fortunately, also a MCAS pioneer.  After an endoscopy and a series of biopsies he was able to diagnose EoE, Eosinophilic Esophagitis.  The biopsies throughout my G.I. tract showed levels of eosinophils and mast cells that were multiples beyond the normal maximum range for both.  He explained that the eosinophils recruit mast cells and in turn they degranulate, releasing the mediators responsible for my many disturbing symptoms.  I don't know how long this condition has existed but I have dealt with allergies my whole life and attributed most of the typical distress to that.  I wasn't until the neurological symptoms started (and worsened) that I knew there was something much more wrong.  It is a long story, and likely all too familiar to many on this forum, but what seemed like dizziness I now know to be extreme "Brain fog".  It started in a cyclical pattern lasting for weeks at a time and finally returning to a normal period that would leave me thinking that whatever had happened was over and gone.  Unfortunately, the cycles always returned, lasting longer and with more disturbing attacks than the previous.  There were days when I felt like being stuck somewhere between awake and asleep, everything in slow motion, sound amplified, light overwhelming, nervous twitching and shaking.  Suspecting MS, my PCP recommended a Neurologist.  The MRI, MRA, EEG and numerous lab tests showed nothing unusual.  That was to be the first of four Neurologists I saw for this, the last being at Mayo Clinic.  I now realize that Neurologists know nothing of mast cell disorders or their symptoms (including the neurological ones) and even though there is research that appears to indicate a correlation between mast cells and multiple sclerosis.

My oldest, adult son is also having symptoms very similar to my own.  He has had all the usual tests too and has an appointment with Dr. Minor this Friday to check for MCAS.  I am told that there is not a proven genetic link for MCAS but family members are statistically more likely to have it as well.  I have also read that the NIH has found some evidence for a genetic pattern with EoE.  

If anyone else has Eosinophilic Esophagitis along with their mast cell disorder I would be interested in knowing what their experience has been with it.

Thanks!

There has to be a genetic link because all my three siblings got it too as does my father and my grandfather also had symptoms.
We all have a hightend Tryptase (little over 11) and sometimes high Histamine levels in blood.

There is a paper:
http://www.ncbi.nlm.nih.gov/pubmed/24098785
Familial occurrence of systemic mast cell activation disease.

Hi Terry--I have Eosinophilic Esophagitis too, and a Mast Cell Disorder.  What are your symptoms besides the brain fog?  If you look up my introduction from Nov or Dec of 2012, I put my main symptoms in there.  They have not stained my biopsies for mast cells yet even though I asked several doctors at Mayo to do that.  The mast cell doctor said he could do that if he needed too.  My biggest issues are with my heart and throat.  I hope you are feeling well today and welcome!

Sarah