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I have been busy writing or speaking to the many physicians and therapists who were involved in my case over the past 2 1/2 years to let them know of my diagnosis. I wanted to inform the therapists and nonneurologists so they can consider this diagnosis if they encounter another patient with similar symptoms. The hand surgeon and podiatrist are glad to hear that I've been diagnosed and that recovery is possible. Both expressed frustration with our medical colleagues who did not consider their input when I presented it at my neurology appointments. The lack of two way communication between specialists hampered my efforts for a speedy diagnosis and I suspect this scenario plays out in the care of other patients, too. The medical profession needs to find a way to correct this problem. Patients cannot be effective intermediaries in relaying opinions, which seems to be the default process at present. Technology exists for teleconferencing but is not readily employed, perhaps it should be. Some physicians will want to be reimbursed for the time involved and they deserve to be, but that should not keep them from meeting the needs of the patient in their care.
I was happy to inform Dr. Grubb of the diagnosis because he had urged me to continue my efforts to find the underlying problem. He reassured me in Dec. 2004 that my symptoms were real and worthy of renewed consideration. I was feeling dejected before seeing him so he provided a true morale boost. POTS and Lymes share many autonomic symptoms so I hope he will recall my case if he finds another patient presenting with POTS at a relatively advanced age for the syndrome. I referred him to the ILADS website for more information. I was also glad to share the diagnosis with one of the many neurologists I had consulted. That physician had treated me with respect and had been diligent in his work-up. When he couldn't solve the riddle he tried to get me in with a specific Mayo Clinic neurologist, unaware that Mayo doesn't operate that way. He was pleased that I had an answer and could be treated. I have not hesitated to send other patients his way because I know he will offer them good care.
I also wrote the PM&R specialist. After my last visit with him I could sense a change in his attitude towards me. In November he dismissed my observations but in March it appeared that his eyes were open and he saw the deficits I complained about. Physicians have a hard time changing their diagnostic impression so I thanked him for being able to do so. I asked him if he would be able to direct my rehab efforts once the antibiotics kick in. I'm waiting to hear back.
The other letters were not as upbeat. I wrote the neurologists who had given me mental health diagnostic labels to inform them of their errors. These were errors born of arrogance, when they couldn't find the diagnosis they took a "blame the victim" stance and declared the symptoms invalid. None of them could fit the POTS, which they knew was real, into their scheme of things but when I pressed this point they ignored it. With an answer in hand they could no longer refute the obvious- they missed the diagnosis because they had stopped listening to me and did not trust my observations. I suspect that neuroborreliosis doesn't get much attention in their journals but given our location it's their duty to consider this diagnosis in patients whose symptoms are suggestive of widespread neurological dysfunction. I reminded them that I, my family and my patients have paid a heavy price for their error. I asked them to think about what might have caused the relationship to get so off track. I hope they do. I plan to contact them in a few weeks if I haven't heard back. I want to understand the breakdown from their viewpoint so that I can help other patients avoid a similar experience.
There was no glee in sending these letters. Physicians get enough negative feedback from payers and employers so I wasn't thrilled to add more. Yet, these physicians need to hear that they were wrong so they can avoid future mistakes. If they can acknowledge the problem they can work on preventing errors of a like nature. Growth can be painful.
I am in love with my profession and guard its reputation with great care. My illness has carried an added psychologic burden because of this love. I simply could not believe I was being treated so poorly, experiencing behavior I considered unprofessional but, as a patient, unable to stop. I had built my local reputation on my listening skills and ability to relate to patients; to be on the other side of the patient-physician relationship and have it go so badly was nightmarish. It has taught me patience, the need for perseverance, the hell of being mislabeled, the power of forgiveness. I guess I'm growing,too.