← Return to Undiagnosed Autoimmune Disease - No one will listen to me

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@kasb

Your symptoms are similar to mine. My allergist pegged my flushing syndrome as Histamine Intolerance with Mast Cell involvement. He put me on Xolair Shots and I responded well. I could have been better a year ago but my PCP put me on Lipitor in June 2021. He ignored my symptoms as LH Covid BS, whiney, faker and turfed me to my allergist to manage my care. I ended up with Severe Rhabdomyolysis (or some other auto immune myositis that can be statin induced) and in Kidney failure headed for dialysis. Then he quit as my doctor as he had the labs in his hands that showed kidney failure. No providers except my allergist, are bothering to help me figure out the diagnosis but he doesn't really know in detail what should be managed by a Rheumatologist. Its been hurry up then wait 3 months for the next appointment. With your symptoms you should consider seeing both an Immunologist and Rheumatologist that will work together as a care team to address problems. Of course dont laugh, because I'm still trying to get that combination. I have a great allergist. I just need the referral to Rheumatology to go through.
I've been at this for 2 and 1/2 years but the LC symptoms were masked/mimicked by a non covid, provider induced problem that should have been easily identified by reviewing my med list. Don't dismiss factors outside of Long Covid. I could be done with Long Covid, IDK because the problems I have now could be statin induced or complicated by Long Covid. I just keep hoping the Rhabdo will finally resolve and nothing else will pop up. Fat chance!

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Replies to "Your symptoms are similar to mine. My allergist pegged my flushing syndrome as Histamine Intolerance with..."

@kasb. I am so sorry you are going through this. I am in shock with all the stories I hear and my own medical journey about how great our medical system is supposed to be. This shouldn’t happen.