I had no idea that I had a mast cell disorder until 2009 when I started going into anaphylaxis every few weeks.  Looking back, I probably had this disorder for a while... heavy bleeding, more than my fair share of the "stomach flu," episodes of dizziness, wacky blood pressure, etc...  If it weren't for the anaphylaxis, I would probably still be wondering what was wrong with me!

Off the top of my head, here's my short list of symptoms that make it pretty obvious you have a mast cell disorder:

- Urticaria pigmentosa (or TMEP lesions, although those are more difficult to recognize)

- Anaphylaxis when you don't have any IgE allergies

- Anaphylaxis to something you're not supposed to be allergic to

It's easier to figure this out when your anaphylaxis is "classic"... difficulty breathing, hives all over your body, etc...  It's harder when you have things like high blood pressure during an attack (textbooks say your blood pressure drops), an absence of skin symptoms, etc...  Good luck convincing ER doctors if your main symptom is something like fainting or severe abdominal pain, but you can still breathe and you don't have any hives.

There are lots of other symptoms that are "typical" for a mast cell patient.  The tricky thing is that they overlap with a LOT of other disorders.  From what I understand, abdominal pain is one of the most common symptoms in emergency rooms.  Headaches are normal even for "normal" people.  Abnormal bleeding is more typically caused by a clotting disorder, not a mast cell disorder.  Enlarged lymph nodes will make your doctor think "infection or cancer" not "mast cell disorder."  Of course, the more symptoms you have, the less likely it is to be something else.  People with celiac disease, for example, can have horrible digestive symptoms, but it's not typical to have dizziness, hives, flushing, shortness of breath, etc... along with that.

No wonder doctors have such a hard time with us!  If you don't have one of the clear indicators I listed above, you owe it to yourself as a patient to have an open mind and keep exploring all the possibilities.

Heather

Once people have a diagnosis, it's a good idea to have a doctor write a letter for the patient to take in case they have to go to the ER.  Mine sums up the papers posted on this forum to be used for emergency situations.  It also says it's okay to give epi for high or low BP.

It's amazing how much weight a doctor's letter can have!  Before I was diagnosed, my allergist told me to say I have atypical idiopathic anaphylaxis.  It's a mouthful, but the ER people did take it seriously.

I do have a folder with information in there, but not a letter. Thanks. I will try to get that done.

Gail

Doctors are trained that, "When you hear hoofbeats, think horses... not zebras."  This actually benefits most patients, because the common causes of various symptoms really are the most common  Nobody has the time or money to consider every possible cause of every symptom... and most patients don't need that level of scrutiny to figure out what's going on.

And then there are the "zebras" like us.  A few months before I started going into anaphylaxis I noticed that one of the lymph nodes in my neck was swollen and it wasn't going away.  I asked my GP about it, and he sent me to a very competent ENT.  Since I don't fit the demographics for lymphoma (at the time I was 33), the doctor tested me for Sjogren's syndrome and gave me a prescription for a powerful antibiotic.  When the test for Sjogren's came back negative and the antibiotics did nothing, he sent me for a needle biopsy.  (The lymph node was still growing).  That was negative for cancer, but to be safe we decided it was best to have that lymph node surgically removed.  The pathologist said it "contained a normal mixture of cells."  It wasn't cancer... but what was it?  The ENT considered his job done and sent me on my way.  Later that year I noticed the same thing happening on the other side of my neck.  I didn't want any more unnecessary surgery.  Long story, but I ended up going to see a researcher (a hemotologist) in Arkansas.  After a very, very thorough battery of tests, he said he was confident that the swelling was not from cancer, infection, or Castleman's disease.  Together we connected the dots to my autoimmune CU and repeated anaphylaxis.  To confirm the diagnosis, even this very high level doctor consulted with his colleagues... an immunologist and the rest of the hemotologists.  This is what it takes to figure out a "zebra."  Other doctors I've seen since then have applauded this doctor for his thorough testing and have supported his diagnosis.  What a relief!  It helps tremendously that I also feel confident about having found the answer... I'm now a much better advocate for myself in all kinds of situations.

Long response to your question, but I think my own case is a good illustration of the difference between "horses" and "zebras."

Heather