Sharing Hemeoncologist Appointment As Promised

[rubytuesday]

I cannot recall the topic I was following but a poster suggested that when I see my hemeoncologist (new visit, referred for the Delta Granule Storage Pool Deficiency found by lab testing ordered by cardiac specialst in dysautonomia), that I ask about a tryptase level. Commonalities were IBS-D, chronic sinusitis, multiple drug, food and environmental allergies, early onset arthritis, fibromyalgia, CFS, tendonitis, pleuritis, tenosynovitis, pericapsulitis, osteomyelitis, osteopenia (early onset), bronchitis, bursitis, pituitary adenoma, ovarian cysts (and cysts on kidneys, lungs, heart), pericardial effusion, diverticulitis, colon polyps, and a host of other ailments.

I was feeling scared and overwhelmed and intimidated going to see a hemeoncologist at big Cancer Center. This doctor could not have been nicer. He listened to me and I took copies of my labs showing low T cells, T-helper cells, IgG1, IgG2, other IgG subclasses and low gamma globulins with fluctuating WBCs mostly 'normal'. He asked about parents having chronic sinusitis (why I did not know--both had cancer). I summoned the nerve to ask about this Mast Cell Activation Disorder (all the while waiting to be dismissed, but to my amazement, I was not). He told me there was a very good chance that it might be. He said that it could be that I just have 'lazy phagocytes'. The satellite clinic where I saw him was not able to perform what tests he thought I needed. So now he has referred me to 2 of his associates in Columbus--referring to one for 'multicomplex immunodeficiencies' and referring to the second one for 'immunodeficiencies and the Delta Granule Storage Pool Deficiency'.

So I am still scared and yet feel comfortable enough to raise the question thanks to you posters who have provided me with info. Had I only seen hematologist for the bleeding (as the letter instructed), the immune deficiencies I've had may have remained missed as a potential piece to the puzzle.

My appointment was the day before Thanksgiving--the same day the phone company accidentally took out my internet when they started up somebody else's new internet services in the neighborhood, crossing the circuits and disabling me until today. My hemeoncologist wanted me in asap and was confident he could do it since he was insider making referral, yet the first appointment isn't until close to Christmas and the other hemeoncologist appt. is late Jan.

Without your discussions and input and references, I would never have learned about the link to such things. Thank you all.

[sue1234]

Sure sounds like a great doctor! Glad you are going further with this and seeing some more specialists. I'm sure we are all curious what all this brings about.

[rubytuesday]

Sure sounds like a great doctor! Glad you are going further with this and seeing some more specialists. I'm sure we are all curious what all this brings about.

I wanted to thank you, personally, but was not sure about posting topic etiquette and not to take away from what I have learned from others as well, but you gave me that drive. Thanks so much. I will let you know what the outcomes are.

[janiedelite]

I'm so happy for you! I love to hear about DINET patients who are empowered to advocate for themselves.

And what a nice, knowledgeable doctor!