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They say Doctors make the worst patients. I tell you what, the Doctors of Doctors make the worst Doctors. An orthopaedic specialist misdiagnosed the Right L5 S1disc sequestration in 1995 as 'just a prolapse.' The damage to my L5 S1 nerve root with anesthesia of my right foot and foot drop was dealt with by a Neurosurgeon. No MRI scan was done. This resulted in a neuropathic ulcer under my right big toe and 19 years of repeated severe septicaemia.  Nobody could cure the ulcer - not even an amputation of the big toe, then the second. Eventually I diagnosed the problem: A sudden rise in blood pressure on effort was damaging the tissues and leading to fulminating infection.  I managed to plead for a beta blocker and after 1 month the ulcer was healed! After 19 years. Soon after the 1st infection I had a total Colectomy and Jpouch after 30 years of uncontrollable UC. After the OP I experienced severe itching over my body. Again in spite of numerous pleas to a variety of specialists, including the Professor of Abdominal Surgery at the London Hospital, no cure as found. Again eventually thinking the whole thing through I diagnosed neuropathic itching  due to severed or damaged autonomic gut plexus. Pregabilin cured it -after 20 years! No surgeon has ever heard of this complication!

The list is endless of errors and ignorance from my medical helpers. I never see the same Doctor twice at the Medical Center. After my pleas to the 5th Doctor I saw to be referred to a Dermatologist at the Hospital for the inflamed bum, I was referred to another GP at a neighboring practice. Only by seeing a Specialist Dermatologist privately was the correct diagnosis made of an extremely rare form of Psoriasis. 

Original Post

It's outrageous that your problems went undiagnosed for so long, but great that you were eventually able to figure it out yourself.

My wife is a physician and I've noticed over the last few years that she schedules more appointments with the nurse practitioner at her PCP's office than with the PCP herself.

"Is it because you trust your own judgment more than your doctor's, and the nurse is more deferential to you?" I asked her.

She smiled guiltily but wouldn't admit to anything.

Different kinds of surgeons/doctors different education system.

Here in France they are taught to never admit that they do not know, never admit that they could be wrong and always make the patient feel ignorant, inferior and stupid.

I had a surgical intern who insisted that I still had my colon and that I could not function without it! It had been 10yrs + since I had had it removed.

Another surgeon (the chief of surgery for a major university hospital and head of the board of surgeons)  after moving my k pouch stoma to just under my belly button (about the worse place I could have a stoma...Where the fat was thickest...The stoma literally sunk and twisted like a corkscrew) informed me that if I did not like it that I could have my pouch removed and thrown in the garbage and because he was the 'boss' that no other surgeon in France would touch me (he was right!)...and that one day I would hemmorage so badly (the cath went down and would hook on the valve, came out ripping everything in its path) that they would bring me into ER and then I would have no choice. 

I lived in fear and pain for 4 yrs until he retired!

But there are also wonderful surgeons who flew across the Atlantic to save my life, who spend hours inventing and creating methods and techniques that have repeatedly saved me. Creative surgeons with unlimited imagination that go the extra mile.

If you are sick long enough (I hope not for your sake) you encounter all kinds...hopefully the good ones outweigh the bad ones.



Goodness me, you have my unreserved sympathy and understanding. The pain and suffering a human being can stand, and does stand, totally outweighs the short term suffering of a terminal illness. We are condemned but still live. But I have found that somehow all this carves a empty shape within us that fills with compassion for the suffering of others.  Some call it karma - bad of course - others just the way the cookie crumbles. But I can absolutely empathise with your pain, frustration, hope and disappointment at the unfeeling attitude of some surgeons. These are technical folk insulated from the inevitable resonance of their patient's pain. We are all connected by sight touch, hearing and by emotion, a phenomenon called clairsentience in which sensitive people resonate with the emotions of others near them. Only those insulated from their receptivity can become emotionally and empathetically insular. Pity them, for they suffer too!

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