That is a big question - what type of doctor. I am not sure where you are located but I would STRONGLY recommend just getting to the ‘top of the foodchain’ as far as doctors go. I, myself, have yet to pull this off for several reasons. It is, however, a huge goal of mine to get to the top; of the foodchain (as far as doctors) and quit the exhausting ‘are you my mother’ tail-chasing.
My genetic doctor dx me w/EDS though. The prob is that any specialist who doesn’t understand EDS and how it impacts EVERYTHING is really not such a good fit. I love my cardiologist and was careful to request one who specialized in genetic disorders due to my EDS - only to find that he specializes in congenital heart defects. There is a big diff in a congenital defect and a genetic disorder of collagen. Ugh! It’s a major struggle and that is why I recommend getting to the heavy hitters.
Clair Francomano, Paul Cheney, Hal Dietz, Pocinki, Grubb, etc. CHeck with EDNF or Marfan national support groups for doctors who would be familiar. SAve yourself years of phychological abuse by doctors and get yourself to where you need to be by seeing a doctor who understands.
Again, this information is hypochritical (coming from me since I’ve yet to accomplish following my own advice) but in my heart I know its best. If not for all of my current obstacles I would have already followed my own advice. Due to rarity of my situation, I have in the past sought treatment by the exact type of microspecialist (top of the foodchain) doctor that I mention - merciful God. Just now I am so bound by so many obstacles I cannot comply with what has been the proper decision for me in the past. I have yet to see the specialists whom I know would be in my best interest considering the current state of my health and the accompanying diagnoses.
I live in Memphis,TN. My daughter and I were diagnosed by a genetisit at Vanderbilt three years ago. Most doctors here arent familiar with EDS or know enough that they dont want to see you! Still havent found a rhuemy for myself. Wondering if we should just make the trip to Baltimore for both of us and get as much info as I can! My four year old has a good cardiologist that deals with EDS. Her rhuemy is pretty amazing as well. I have had much better luck with the pediatric side than adult and even that is minimal. How do they test for POTS?
I’ve had these awful headaches, they come on in an instant & it feels like I’m being electrocuted. That usually last for a few seconds (5-20) then a tremendous amount of pressure. I have pressure & pain at the cavity where your neck meets your spine & through my shoulders & between my shoulder blades bad!! I’d beg my hubby to DIG his fingers in that cavity at the base of my head & ask him to try & punch his fingers around my spine… My neurologist said I probably had “occipital neuralgia” and put me on Gabapentin…gave me awful chest pain. I told him about reading “The Driscoll Theory” and asked about Diamox… He was reluctant but let me try it. The first pill I took helped SO MUCH!!!!
Me… I was told it was part of my occipital neuralgia, there’s ligaments/muscles w/e that travel that path from the base of the neck to the scapula area.
Speaking of bad necks, I also have ringing/hissing in my ears that comes and goes. Sometimes I’m able to stop the hissing and ringing based on the direction I tilt and hold my head. Very weird… and majorly annoying.