8th December 2006
I'm a 27 year old male with generally a happy demeaner and I've had a host of ***zare and
oftentimes disabling symptoms that are quite similiar to the symptoms
of mastocytosis. However, I've had two urine tests that revealed normal
histamine levels and an allergist doesn't believe I have it. My first
symptoms were flushing after warm showers, then two rashes on my face,
exzema and then I began to experience parathesias on my face including
tingling and burning sensations. Those sensations eventually spread
throughout my whole body. I noticed heat, exercise, caffeine, and soda
triggered more burning and tingling along with pressure-like
sensations. Soon I developed mild dermatographism. A couple years later
my eyes became red and dry and I was no longer able to wear contacts.
My ears became very sensitive to moderately loud sounds which forced me
to wear earplugs regularly. I was put on H1 & H2 blockers in 2001 for the dermatographism, but I noticed no effect and stopped taking them in 2003.
2004:
My right arm near my shoulder began to
experience pain from lifting. An MRI revealed nothing unusual. My parathesias had gotten down by that time
but soon came back with a vengeance after I began to have lower left
quadrant cramping and bad constiation. Shortlys there afterwards my
left arm began to ache in the same manner as my right arm, just not as
severe. I could no longer drive or engage in rountine activities
because of the pain.
2005:
My stomach then began to burn after taking indocin
for my shoulders and I became more sensitive to other foods that caused
more parathesias. Eventually my stomach created more problems through
bad heartburn, early fullness, nausea, and bloating which led to me
losing more than 45lbs. I've had bouts of shortness of breath that one
time led me to go to the ER but I was cleared of any lung problem.
2006:
I've had an extensive work-up and all that's been found is limited autonomic neuropathy and the treatment of which has had little impact. The onlyother common element to these symptoms is that there appears to be mildchronic inflammation of my stomach, small bowel, and face. I went to the Mayo Clinic and after a long and exhausting work-up they said I had limited autonomic neuropathy. I've been on a tricylic antidepressant to treat autonomic neuropathy with little results. My parathesias are far worse now than when I was at the Mayo Clinic in February.
My arm pain
doesn't hurt as much when I don't use my arms but hurts more after
using them to drive and what not. In other words, I think there's
chronic inflammation in my arms as well because the doctors can't come
up with anything. Simply typing this aggravates my arm pains.
My stomach symtoms and parathesias seem to work in a similiar fashion. That is, if I drink caffeinated soda my stomach will begin to burn after a few sips and soon afterwards I feel tingling and burning in my face, arms, and legs. It's so ***zare and extremely uncomfortable.
As I've said, they don't believe I have mastocytosis but after reading
about Mast Cell Activation Syndrome or Disorder perhaps my symptoms are
related to the latter. How is MCAD even diagnosed since it has to do with abnormal functions on mast cells and not having too many mast cells like in mastocytosis? I'm planning on telling my
gastroenterologist about MCAD to see what he thinks, but I'm not sure
if he's familiar with it. I'm at my wit's end but am hopeful that if
this is MCAD that perhaps gastrocom and taking antihistamines again may finally bring me some relief so I can get on with my life.
I'd appreciate any advice I can get! Thanks!
oftentimes disabling symptoms that are quite similiar to the symptoms
of mastocytosis. However, I've had two urine tests that revealed normal
histamine levels and an allergist doesn't believe I have it. My first
symptoms were flushing after warm showers, then two rashes on my face,
exzema and then I began to experience parathesias on my face including
tingling and burning sensations. Those sensations eventually spread
throughout my whole body. I noticed heat, exercise, caffeine, and soda
triggered more burning and tingling along with pressure-like
sensations. Soon I developed mild dermatographism. A couple years later
my eyes became red and dry and I was no longer able to wear contacts.
My ears became very sensitive to moderately loud sounds which forced me
to wear earplugs regularly. I was put on H1 & H2 blockers in 2001 for the dermatographism, but I noticed no effect and stopped taking them in 2003.
2004:
My right arm near my shoulder began to
experience pain from lifting. An MRI revealed nothing unusual. My parathesias had gotten down by that time
but soon came back with a vengeance after I began to have lower left
quadrant cramping and bad constiation. Shortlys there afterwards my
left arm began to ache in the same manner as my right arm, just not as
severe. I could no longer drive or engage in rountine activities
because of the pain.
2005:
My stomach then began to burn after taking indocin
for my shoulders and I became more sensitive to other foods that caused
more parathesias. Eventually my stomach created more problems through
bad heartburn, early fullness, nausea, and bloating which led to me
losing more than 45lbs. I've had bouts of shortness of breath that one
time led me to go to the ER but I was cleared of any lung problem.
2006:
I've had an extensive work-up and all that's been found is limited autonomic neuropathy and the treatment of which has had little impact. The onlyother common element to these symptoms is that there appears to be mildchronic inflammation of my stomach, small bowel, and face. I went to the Mayo Clinic and after a long and exhausting work-up they said I had limited autonomic neuropathy. I've been on a tricylic antidepressant to treat autonomic neuropathy with little results. My parathesias are far worse now than when I was at the Mayo Clinic in February.
My arm pain
doesn't hurt as much when I don't use my arms but hurts more after
using them to drive and what not. In other words, I think there's
chronic inflammation in my arms as well because the doctors can't come
up with anything. Simply typing this aggravates my arm pains.
My stomach symtoms and parathesias seem to work in a similiar fashion. That is, if I drink caffeinated soda my stomach will begin to burn after a few sips and soon afterwards I feel tingling and burning in my face, arms, and legs. It's so ***zare and extremely uncomfortable.
As I've said, they don't believe I have mastocytosis but after reading
about Mast Cell Activation Syndrome or Disorder perhaps my symptoms are
related to the latter. How is MCAD even diagnosed since it has to do with abnormal functions on mast cells and not having too many mast cells like in mastocytosis? I'm planning on telling my
gastroenterologist about MCAD to see what he thinks, but I'm not sure
if he's familiar with it. I'm at my wit's end but am hopeful that if
this is MCAD that perhaps gastrocom and taking antihistamines again may finally bring me some relief so I can get on with my life.
I'd appreciate any advice I can get! Thanks!