Hypermobility Basics

Finding a Good Doctor When You Have a Connective Tissue Disorder

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Finding a good doctor is difficult when you have a genetic connective tissue disorder. No specialty of doctor is taught how to treat connective tissue disorders in medical school.    So the few doctors who understand my disease are either busy diagnosing children with it or doing research.  There is one clinic near me that helps children with  my disease, but since I was 22 when I was diagnosed they won’t take me.  Never mind the fact that their own orthopedic doctor should have recognized that I had more than scoliosis when I was at that clinic when I was 14!

Over the last year or so, many of my specialists (each of which struggles to help me with a different area of my body) said they wanted Mayo Clinic to take me so that Mayo could tell them all how to handle me.  Unfortunately, Mayo doesn’t seem to take new patients unless they actually have a doctor who knows how to help – or at least I’m assuming that’s why they’ve rejected me.    They never give me a specific reason, even though I’ve tried to get in about 7-8 times since I first became so severely ill 5 years ago.

My specialists also suggested that I’d be better off if my primary care doctor is an internal medicine doctor instead of a family doctor.  And, after about a year of searching, I did find a nice one (at least, I think.  It’s hard to tell after just a few months.)  But she isn’t able to really help with all of the physical issues that make it a struggle to do basic things like riding in a car or showering.  I have a good physical therapist, and in the long run that should really help.  But most people with my disease spend their entire lives working on physical therapy.  I need more that just that to get through life. I need a doctor who is willing to work with me and help me get what I need to live with my disease, rather than just assuming that I will be perfectly healthy soon since I’m young.

So, my new primary care decided to try referring me to a physical medicine and rehabilitation (PM&R) doctor.  She said they are supposed to be the people who help patients who have lifelong illnesses, but she also said I’m the first patient she’s ever sent to one even through she’s been practicing for 19 years.  I’m a bit nervous because I had a terrible experience with a physical therapist at the same clinic who didn’t listen when I told her she was twisting my neck too far.  Of course, I have my own physical therapist right now, but sometimes clinics insist that you have to do everything with them “or it won’t work.”  If I can’t just see the doctor, or if the doctor is rude too, I’ll certainly leave right away!  Here’s hoping for the best!

❤ Clare


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