My immunologist called and said the good news is I don't have Mastocytosis because apparently it is a very deadly disease. So that is a plus. Dying is usually frowned upon. BUT we still don't know what my body is trying and failing at doing. so my next step is seeing a SLU dermatologist/immunologist...I also have 2 heart doctors to make appointments with.
While I am so grateful for the god news I am still in pain for no known reason and I am left with no answers. I just want a diagnosis because you can't do anything without that. This process is really discouraging and just know that sometimes I have to pull away and re-group so if I vanish that is why. Well, outside of some medical emergency but that would spread like wildfire.
My pallitative care nurse saw me yesterday and is just as confused as I am but she said that basically every Wednesday the whole team meets and talks about patients and how they as a company can help and she is putting me at the top of the list ( yay me) She said they will establish a plan and work together to help me out.
lastly, I like the word "team".
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