I regret that I am no longer able to see new patients, now or in the foreseeable future.
However, I have now completed the educational articles that are posted on my website at AlanSpanosMD.com. Some of these are for patients, and some for their doctors. Most people who have hypermobility-related conditions will get much better medical care if they, and their doctors, get familiar with articles such as these. With these conditions, patients themselves need to get well informed, so they can guide their doctors to learn enough to help them. Most of the methods for treating hypermobility conditions are familiar to doctors in relation to other illnesses. They don’t need to learn a lot of new material. They just need to apply what they already know, with a bit of direction on how to best focus on the medical problems of people with EDS and related conditions.
So I strongly recommend that you download the relevant articles, and see if you can interest your local doctor, or doctors, in following the guidelines they contain on diagnosis, and treatment. The articles for family doctors and internists are Joint Hypermobility Diagnosis for Non-Specialists, and Medical Care of Patients with a Hypermobility Disorder.
First though, please read The EDS Predicament and How To Get Through It. It contains specific suggestions on how you can try to interest your doctor in learning about your condition, and learning about you: this will be crucial for your long-term medical care. The titles of the other articles are self-explanatory. I suggest you get familiar with the ones that are relevant for you and consider pursuing the suggestions in them.
You do not need to wait for an “official” diagnosis from a geneticist or some other specialist, in order to have good medical treatment. A “presumptive” or “working” diagnosis made by your primary care doctor is quite enough to guide your treatment, while awaiting confirmation by a specialist. Or the doctor can make a general diagnosis like “Hypermobility Spectrum Disorder (HSD)” of which there are several types, but leave it to a geneticist to specify which type you have. Again, a presumptive or “working diagnosis” is quite enough to get the patient’s treatment going better, and in many cases, seeing the geneticist won’t add anything to the treatment plan.
Whether or not you can interest your local doctor in learning about your condition, you yourself should learn as much as you can about it. Other than the articles on this website, useful websites are those of the Ehlers Danlos Society at ehlers-danlos.com, and also EDSawareness.com, and patient support groups at inspire.com and elsewhere. You can easily find these by googling “EDS support” or something similar. These websites are also your best resource for finding doctors who have experience with EDS.
Alan Spanos MD, MA