Hello all! I haven't been on here in awhile, but I have a question and I know from my last post how supportive and helpful everyone here is so I am coming to you.
A quick story: I went to see a primary care doctor, someone who can work with me on a more general basis than Mass General, communicate with my neurologist, and prescribe meds. I listed all of my symptoms, TN/ON/and beyond, it's a long list. He looks at me, after I trusted him with my personal health information, and says "you sound like an old car I have had for 20 years that is FALLING apart." Yes, that is just what someone wants to hear when they are trying, even that day, to feel and look even halfway normal. He is my age and his lovely, put together wife who doesn't have health problems is right outside in the hallway. He prescribed meds for TN/ON but would not write a script for pain and has not responded in two weeks to any of my calls about issues with the new meds and the intense pain level.
Feeling confused, sad, angry and humiliated has turned into the drive to find a primary care doctor who understands bilateral TN/ON and demyelination.
Does anyone know a PCM in Maine or even NH who has a grasp on TN/ON/demyelination/etc?
Thanks, and stay well all!
I still think writing out your experience is likely to be your best approach for tomorrow's appointment. Suggest that you start with this outline:
1. My pain symptoms are presently [one paragraph, up to 8 lines]
2. My pain began as [one paragraph up to 8 lines]
3. I am presently taking [list of meds]
4. I am also feeling emotionally exhausted and having a hard time communicating.
Bring a copy of your medical records if you have one. If you don't bring the names of doctors who have treated you most recently, and be prepared to sign release forms so the new doctor can request your records.
As for the longer term question of where to be treated, Maine and NH aren't really great places for practitioners familiar with these disorders. But you could try these from our "Find a Doctor" page:
Bangor: Husson Internal Medicine
Dr. Julie Kingsbury, FNP
Lewiston
Dr David Burke
Phillips
Tufts Oral Dentistry
New Hampshire
Hanover:
Dartmouth Hitchcock Medical Center
Dr. David Roberts
Dr. Levin
Massachusetts
Boston:
Arnold Pain Clinic
Massachusetts General Hospital
Dr. Chen
Dr. Emad Eskandar (director of neurosurgery),
Dr. Jeffrey Shafer - Oral and maxillofacial pain clinic
Dr Kiran Thakur
Dr Adam Cohen, Inpatient Medical Director of Neurology
Dr Frederick Barker
Brigham and Women's Hospital
Dr. Ian Dunn
Dr. David Pilgrim
Beth Israel Medical Center
Tufts Medical Center
Julian Wu
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Regards, Red