How to Prepare for your First Appointment with an EDS Knowledgeable Physician
Blog Post #4
You may be here because you are diagnosed with EDS or because you suspect you or a loved one has EDS, but you can’t quite find a medical professional/practitioner who will listen to you. First step I encourage all of you to do if you have yet to receive your diagnosis is to continue being your OWN best advocate. Do your research. If you are reading this and suspect you or a family member may have EDS, I am sure by this point you have heard of the Beighton Scoring System. If not, that will be one of my next blog post’s topics and I will go into more detail then. For now, head to ehlers-danlos.com, hover over EDS & HSD, select the “Accessing Joint Hypermobility” from the drop down options. You can learn more there in the meantime. If you are looking for a Geneticist/Medical Practitioner who will listen to your concerns, please head to ehlers-danlos.com. Choose Health Professionals and then choose the drop down option, “Healthcare Professionals Directory”. From there, you can search by your state or country and find a medical professional near you. Please keep in mind, most of the time it will be worth your drive if you have been recommended to an EDS knowledgeable practitioner by others on a similar journey from an EDS Facebook support group. I had heard the term EDS on IG, far before ever being made aware of this connective tissue disorder by any of my medical providers. Once I heard of Ehlers-Danlos Syndrome and thought that could be me, I joined some EDS FB support groups. This allowed me more support from others who had experienced similar pain and symptoms, as well as allowed me to receive recommendations regarding EDS knowledgable physicians. Everyone has their own opinions about FB groups, but I have found most of them very helpful. I have learned to limit my time on them, but I do know where to turn to when I am looking for a specific doctor that is EDS aware. For example, when my hip pain became unbearable, I was recommended a few EDS aware Hip Orthopedics in NY, to better my care & save me time in all the research. Next step is to write out a very detailed list of EVERY ONE of your current/past/intermittent symptoms. If it’s a symptom that comes and goes, it is still just as important to document. I used to second guess myself at the beginning of my journey to a diagnosis. For example, I will get this electric shock like feeling that starts in the bottom of my cervical spine (neck) & travels into my skull/occipital area. It comes and goes. But when it is present, it is excruciating and debilitating. However, I could sometimes go months without experiencing this symptom. That does not make this symptom any less important than a symptom that may be present daily. I share this to encourage you that even if it is a symptom that may come and go, it is NOT normal to be in pain. Keep a log of your day to day symptoms for a few weeks. Over the course of a few weeks, then transfer all these symptoms into a word document or a notebook you will have present with you on the day of your appointment. Along with your symptoms, you should have your surgical history present, as well a list of any medications you are currently on. Organizing your medical records before this appointment is crucial. If you are like most zebras and have gone to multiple specialists before seeing a Geneticist/EDS aware Physician, as EDS often affects the whole body, it is important to bring ALL these records with you. It’s likely you may have seen an Orthopedic, Rheumatologist, Neurologist, Allergist/Immunologist, Pain Management specialist, etc. Keep these documents organized by topic. I highly suggest organizing all these records in a binder if you are a paper & pen person like me. If you have online records to these documents, then I highly suggest downloading all your records onto a hard drive/flash drive. Aside from your own symptoms and surgical history, the next very important step for an appointment with a Geneticist/EDS knowledgable Physician is to have a very detailed list of your family members’ diagnoses/undiagnosed symptoms. This includes siblings, parents and grandparents. Most geneticists prefer this list for at least 3 Generations. Every little symptom or oddity you can think of is important for this piece of the puzzle. If you are unsure of how it could relate or you really think it does not relate to EDS, just list it. (Still until this day, I notice more and more symptoms that are caused by/due to my faulty connective tissue.) This is for your Geneticist to analyze and take a closer look at. Keep this family history document handy, as you will find yourself referencing it often, if you do obtain a diagnosis of some type of Ehlers Danlos Syndrome or Hypermobility Spectrum Disorder. You are on your way to a diagnosis and feeling validated. I wish you all the very best. You are never alone on this journey! Next blog post covering the topic of Iron Infusions