Can I just vent a little bit today? About my fellow physicians?
Mind you - most physicians start with the best of intentions, are very intelligent, and being a doctor is hard. Especially today when so many work in managed care and have to see too many patients in too little time - burnout is a serious problem for them. I get it.
Nonetheless - in the last 15 years it seems like I have witnessed a rise in stupid doctoring that I really didn't see in my earlier years as a physician. So much so it makes me wonder sometimes what they are teaching in medical school these days!
My latest experience - I saw a young friend of my middle son's (for free because he doesn't have the money to see me). He has absolutely classic symptoms for a rare (1 in 5,000 people) autoimmune neurological disease. It's something we ALL learned about in medical school (because the mechanism was understood even when I went to school, and it's a kinda cool disorder to study because it demonstrates some basic principles about nerves and synapses and how they work).
He belongs to a large staff-model HMO which generally provides good care and is one of the main providers in our area. He has seen his neurologist (who treats him for migraines) and has seen not one but two neuro-opthalmology specialists (because the presenting symptoms often involves the eyes). He had a single antibody test to rule out this rare disease. (He also had a brain MRI which was normal).
Now granted this is rare - I knew one woman socially who had it 20 years ago and think I might have seen a case in medical school - that's it. And I'm certainly not up to date on the latest info so I did spend a little bit of time looking up current recommendations. But even a cursory search shows that he is being completely mishandled by his doctors.
1) The antibody test he had is positive in 85% of cases. But of the remaining 15%, 1/2 have a different antibody. This test should routinely be done if the first test is negative (Labcorp even has a test that is set up to automatically do the second test if the first is normal). Yet none of his physicians recommended it nor would they order it. They simply insisted he didn't have it because the first antibody test was negative.
2) One of the doctors told him he couldn't have the disease because he wasn't female (most cases in his younger age group are female). Well - he's a transgender man who was born female and it's all over his chart! Plus things like that are never absolute.
3) One doctor told him he couldn't have it because his eye drifts inward instead of outward (even though it has also gone outwards on occasion and the general problem is caused by muscle weakness which can affect ANY of the muscles around the eyeball).
4) That same doctor told him it must be a problem inside the eye socket - even though he also has facial muscle weakness, difficulty swallowing and weakness in his arms! Please tell me how a mechanical problem in the eye socket is going to cause all those other symptoms?
5) There is an old bedside test for this disease (which is in all the medical textbooks and on the websites for this disease) called the Ice Pack Test. The muscles become weak on repeated use. A droopy eyelid can be tested by putting an ice pack on the area for 3-5 minutes and seeing if the symptom resolves. (This is just a temporary fix but a diagnostic test that relies on the fact that a particular enzyme is slowed in the cold, improving nerve transmission). So, I had him do some facial exercises to wear his muscles out, and we were able to produce the one-sided facial drooping and turning inward of his left eye. Then he put an ice pack on his face for 3-4 minutes and it all went back to normal. He took photos before and after which clearly demonstrate the change. (Really, they could be textbook illustrations). He sends them to his most recent neuro-opthalmologist who denies they have any relevance but finally agrees to send him to the neurologist who treats most of the patients with this disorder.
Honestly, this case should not be hard. The onset of symptoms, the pattern of symptoms, the history, the positive Ice Pack Test - really you could pretty much diagnose it clinically even without antibody tests or an EMG (which is the other indicated test). There's really not another good explanation for all these symptoms than this one rare disease. And the only thing that's changed since I went to medical school in the 80's is that there are more antibody tests for the rarer forms - treatments really haven't changed in all that time.
I'm smart but I don't have any specialized knowledge about this disease, only what I learned in medical school and what I could easily learn now by reading just a few things. ANY doctor SHOULD be able to do this. Simply listen to the patient, read a little bit, and do a good physical exam. WHY IS THIS SO F-ING HARD???????
Grrrrr. I'm glad he has me in his corner. I wrote a detailed letter about his diagnosis that I hope will light a fire under the doctors there. (Sometimes when an outside doctor documents in writing the need for certain tests they will do them because of medicolegal liability). But none of this should have been necessary. Even if his primary care doctor couldn't make the diagnosis, he saw THREE specialists in neurology who should have been much more familiar with the workup and diagnosis than I am.
Ok - rant over. I just had to vent. Any of you struggling with stupid doctoring, I feel for you. Keep advocating for yourself.