u/kirkipickup

Looking for advice before my first Allergy/Immunology appointment.

I’ve been working with a rheumatologist who suspects hEDS and fibromyalgia. I met the clinical criteria for hEDS, have been referred to genetics to rule out other connective tissue disorders, and am also working with neurology as part of my ongoing workup. My rheumatologist referred me to Allergy/Immunology as well, and I’ve been waiting a while for this appointment.

I’ve had enough specialist appointments over the past year to know that some are incredibly helpful and others end with another referral, normal labs, or more questions than answers. I’d love to go into this one as prepared as possible.

For those who have seen Allergy/Immunology, especially in the context of hEDS, MCAS, POTS, chronic itching, hives, flushing, or similar symptoms:

• What do you wish you had known before your first appointment?

• What information was most useful to bring?

• Were there any questions, tests, referrals, or symptom tracking that made the appointment more productive?

• Is there anything you wish you had asked about sooner?

I’ve been digging through older posts and already plan to bring photos of symptoms and request a blood test over scratch test. Curious if there was anything else that ended up being particularly helpful.

Also, if anyone is in Orange County, CA and has an allergist/immunologist, geneticist, neurologist, or other specialist they’ve had a great experience with, I’d love any recommendations.

Not looking for a diagnosis. I just want to make the most of the appointment after waiting so long and avoid walking out realizing I forgot to ask something important.

Thanks!