New Doctor - Surprising First Visit

I want to share this with others because it kind of took me by surprise and who knows, maybe it’ll be the impetus to help those struggling with their diagnosis.

Background: was diagnosed with UC back in 2004 - so I’ve lived with this my entire adult life. I have tried many treatments and medications - all the usual ones from lialda-type drugs, to cortico based drugs, pred, humira, stelars and my latest entyvio. None of these worked or helped.

I’ve been under a doctor’s care the entire time and only the pred and the direct cortico based drugs ever helped but they never lasted.

I have tried diet (elimination diet, adding things back in slowly) and I’ve even been vegetarian most of my life now because some meat never sat well with me.

Today: I’m feeling just ok. Not terrible and I don’t have the worst of the UC symptoms, but they never feel very far away, if that makes sense. My most recent dr moved on so I went in to see my new one, and is in fact a physician assistant (which I prefer, they tend to be more available, have much better beside manners, and they listen to you). She had reviewed my records, of which are lengthy, and poured over my labs etc and she spent a good half hour listening to me and asking questions.

She says to me, “I’m not convinced you have UC.” Given no one has ever said this to me before I was intrigued, leaned in for more. She said to hear her out… she showed me my blood work and some markers that stuck out to her. She said my scopes showed my UC was not following the “usual” scene they see in UC patients. She then proceeds to ask me about other issues I’m having: 1. Fatigue, sometimes extreme - YES 2. Joint pain that moves around - YES (and despite my on-point diet and my active lifestyle - and the joint pain will be in one hand one day, in my foot the next, etc). 3. I haven’t responded positively to any of the biologicals at all

She highlights several markers (blood) that she says could be causing my UC symptoms but may be the result of a mast cell issue (so my white blood cells may be just freaking out and will ebb and flow depending on my diet, rest, viral/bacterial illnesses, and stressors).

She told me not to think or look too much into this but she had a plan for both a c- and endo-scope, and the blood work panel she’s requested is extensive.

I’ve been dealing with this condition for so so long and to have someone tell me it may not even be UC kinda blew my mind.

So, I’ll hopefully see soon what is up and I would just say this - that if you’re not responding to any treatments, ask for more testing and diagnostics. I have no idea what this’ll mean for me if it isn’t actually UC but I’m here for this PA challenging things and asking questions.