Madness.....

[MeganMN]

Well, here I am, over a year later and many, many diagnostic dollars....... 

My Story:

I began having SEVERE flushing episodes in 2004 after a series of blood transfusions.  The flushing was dry, preceded by a feeling of heat, and ended in my chest, neck, and face looking like a lobster.  I would get tight in my chest, a little bit of a wheeze, sometimes dizzy, tachycardic, and feel really spaced out.  It happened with red wine, then white wine, then sometimes other alcohol, spicy food, sometimes tomato based food, sometimes chocolate.  Now it happens when I get too hot, in the shower, when I am cleaning, if I am concentrating too hard, if I am sad, mad, embarrassed, upset, frustrated, etc.  I also get hives sometimes from friction, heat, exercise.  I had an Allergist that suspected Mast Cell Activation.  Then in 2012 I had a severe reaction to a prednisone taper for poison ivy that caused me to have major orthostatic tachycardia, palpitations, syncope, dizziness, headaches, etc.  Those symptoms mostly resolved.  

In 2018, the symptoms returned and I have struggled with intermittent orthostatic tachycardia, dizziness, headaches, nausea, etc.  It is always worse in the early morning and late evening.  I still have the flushing.  I have had several tests come back positive that were suggestive of a Neuroendocrine Tumor, so I went to Mayo for a full evaluation by several specialists.  They initially agreed with the potential diagnosis of a NeuroENdocrine TUmor but were puzzled that no tumor could be found.  He has since become uncertain that I have a tumor and is wondering if there is some other disease/disorder at work.  We are heading back in the Spring for a special Gallium PET/MRI, labs, a consult with a CardioThoracic surgeon to evaluate a calcified mass in my chest, and a Tilt-Table test.  I also have an appointment with an Allergist/Immunologist to see if this could be Mast Cell Activation. all the doctors seem completely puzzled.  The symptoms are consistent with a NeuroEndocrine Tumor. They are also consistent with MCAS, but none of the labs make sense.  Sometimes they point to one. Sometimes to the other.  I feel like there has to be a way to differentiate at some point.  No one seems to have a clue.  Hopefully the Tilt Table will be helpful.  Hopefully I can get a post-flushing Tryptase level drawn.  Hopefully the Immunologist will have some answers.  Hopefully the CardioThoracic surgeon can figure out what the mass is. Hopefully the MRI will shed some light on things.   Lots of money gone....Lots of time gone by......  Lots of hope..........Not a lot of answers.......

[MomtoGiuliana]

Thanks for checking in.  I am so sorry you still have no answers.

[Stark]

This sounds like classic MCAS to me. Tryptase is usually not elevated in MCAS fyi. It is very difficult to diagnose via blood tests since only a few of the mediators released by the mast cells can be tested for. 

[MeganMN]

@Stark this is what I have felt all along, but everyone got sidetracked when some of my labs came back positive for an overproduction of serotonin.  My Plasma Histamine was high, but Tryptase always normal.  We will see what the Allergist has to say.  It would be nice to at least get a Tryptase drawn after a reaction.  From the extensive research I have done, though, there are so many mediators responsible and it could be something other than Trpytase in my case- like Histamine or Serotonin, or others.  We shall see.  Last night I had my first in a long time middle of the night tachycardia episode too, hoping the POTS symptoms do not come back after having been gone for a bit.