Update on my young patient with the probable neuromuscular disease. He FINALLY got to see the specialist neurologist in his HMO that treats people with this disorder. It was a TOTAL bust. She told him she could "recognize it across the room" and that he didn't have it. She did just a basic neuro exam but made NO attempt to elicit the symptoms (in this particular disorder if you ask a patient to repeatedly contract a muscle it will get weaker and weaker. ) Then with no further ado she declared his disorder as "somatoform" (all in his head) and when he asked about treatment was told curtly to just go back to his psychiatrist!
(Btw - if you only diagnose the cases you can "see across the room" you are DEFINITELY missing cases!)
I was so mad, I had steam coming out of my ears. So I called up a local private neurologist who is listed on the foundation list for people with this disorder to get a curbside consult. I asked her "I need to know if I'M crazy or they are?". I reviewed the case history with her and his symptoms. Her first question was "have they done a repetitive stim EMG?" which is the next logical step in the workup - which of course they will not. She said it really did sound like the disorder I think it is and agreed with my plan to go ahead and try him on the medication that is usually used for this to see if he improves (that would be diagnostic also). She was just as appalled as I was at his treatment by them. It was such a RELIEF to have my assessment validated. It;s pretty disorienting when something looks just like a duck and quacks just like a duck and the specialists are saying it's not a duck.
He'd have to pay out of pocket to go see her but if this works I'm going to fight to see if we can get his HMO to approve him seeing her.
It makes me so mad because I know what is happening here. It's a combination of arrogance ("how dare the patient look up their symptoms on the internet and ask for a workup for the disorder that EXACTLY MATCHES his symptoms? Doesn't he know I am the almighty poobah?") and prejudice ("this obese trans man with a bipolar diagnosis makes me feel weird so I can't see past that to see what a genuinely kind and smart person he is and treat him with respect").