Wow, where do I began? When you think of medical professionals you think of someone that you can trust. That one person who has all the answers. In my experience Charcot-Marie- Tooth disease is a curve ball to them. Just like you most have no clue, and most that do seem like they know what it is, is because they look at your chart and get familiar with it right before walking in the room. Having CMT means lots of doctors visits and lots of different doctors.For me this is a short list of medical professionals in which I NEED:
Family medicine -(Typically the only Dr that most people have) Family medicine (FM), formerly family practice (FP), is a specialty devoted to comprehensive health care for people of all ages; the specialist is named a family physician or family doctor.
Neurologist – A neurologist is a medical doctor who specializes in treating diseases of the nervous system. The nervous system is made of two parts: the central and peripheral nervous system. It includes the brain and spinal cord.
Physiatrist – also known as Physical Medicine and Rehabilitation (PM&R) physicians Physiatrist treat a wide variety of medical conditions affecting the brain, spinal cord, nerves, bones, joints, ligaments, muscles, and tendons.
Podiatrist – a medical professional, a physician devoted to the study and medical treatment of disorders of the foot, ankle and lower extremity Podiatrists are the only medical professionals who exclusively specialize in treating the foot and ankle.
Orthopedic foot surgeon – is the branch of surgery concerned with conditions involving the musculoskeletal system. Orthopedic surgeons use both surgical and nonsurgical means to treat musculoskeletal trauma, spine diseases, Sports injuries, degenerative diseases, infections, tumors, and congenital disorders.
Orthopedic hand surgeon specializes in arthroscopy of the shoulder, elbow and wrist, trauma, reconstruction of areas affected by rheumatoid arthritis and osteoarthritis; nerve compression syndromes; and pediatric orthopedic hand problems
Orthotist – An ABC certified orthotist and/or prosthetist is an allied health professional specifically educated and trained to make and fit orthoses and prostheses and manage comprehensive orthotic and/or prosthetic patient care.
Physical therapists- sometimes called PTs, help injured or ill people improve their movement and manage their pain. These therapists are often an important part of rehabilitation, treatment, and prevention of patients with chronic conditions, illnesses, or injuries.
Occupational therapists- use special equipment to help children with developmental disabilities. Occupational therapists treat injured, ill, or disabled patients through the therapeutic use of everyday activities. They help these patients develop, recover, and improve the skills needed for daily living and working.
Needless to say I get to know a lot of different doctors. And with each of these doctors I am extremely picky. I have been lied to, told I don’t know correct information regarding Charcot-marie-tooth disease (it’s not like i live with it every day of my life or anything). As these bad experiences with all these doctors continued I made the choice that I would call them out once and if they can’t be honest with me about their knowledge on my disease that they are treating me for then I dont need to stay. As of today I have walked out of three separate doctors offices. Praying I dont ever need to do it again. But my point is doctors dont always know your condition and sometimes they aren’t honest regarding such knowledge. But when I find good doctors i then try to stick with them for as long as possible. This is an ever-changing list and I dont have a single doctor now that I had 18 years ago when I was diagnosed. My longest standing doctor patient relationship is 10 years. My family medicine doctor has surprised me by knowing so much about CMT and even treats other patients with it.
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