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Thank you so much for this advice, Barbara! I agree that the key is really having a doctor who is flexible enough to understand (or learn) that that there are symptoms which, though no cause for alarm in a patient without EDS, could well indicate something serious in an EDS patient. It’s fantastic- and encouraging- that you have been able to get your GP on board, and also that you’re working to make the health care system more amenable to this sort of approach for patients with “invisible” chronic diseases in general. I’m also glad to hear that you’ve had good results with the diamox/zyrtec/zantac regime- I certainly plan on talking with (probably not my current, but another more flexible) GP about it.
My research is actually on developing detection systems for the study of toxic species (protein aggregates) in Alzheimer’s disease. Interestingly enough, we expect vague similarities between the mutation-induced misfolding events in some forms of Alzheimer’s disease, and the altered collagen structures observed in some forms of EDS!
All the best 🙂
I am a new user, diagnosed at 15, doing a PhD in Chemistry at Cambridge and sooo thankful to have found pretty-Ill! I am currently in the States recovering from a series of stem cell and other regenerative joint procedures because my experience of medicine in England is…RUN! A year and a half ago I broke my toe and requested an X-ray of my GP because I know with my EDS, things just need to be handled differently. He refused and told me to wear “supportive shoes” for the 45 minute walk to and from my lab. Several visits back to him (during one he decided to manipulate it to see if it was broken, displacing the fracture) 2 visits to A&E over two months as I progressively became unable to walk at all, the last in which I requested the MRI my American doctor said I needed and they sent me on my way saying they agreed, but had no authority to order one. I eventually had to get to London to see private Doctor who did the MRI, found 4 foot fractures, bone marrow lesions and nerve damage which required a cast for 6 months, all of which could have avoided by simply treating my broken toe! Then last November in my UK official EDS evaluation the consultant manipulated my knee for range of motion despite my plea not to…and the next day it dislocated such that I needed to go back to the states again. Lastly, 9 weeks ago both knees, back and shoulders all gave out at once and I was unable to leave my flat for 3 weeks and I felt more ill than I had ever felt in my life. My GP said it was either a virus or I was depressed. I traveled home to the states to find out the “virus or depression’ was a dural leak, and we are still trying to figure out exactly what happened to cause such a profound and sudden “disassembly”. As someone who has lived in the UK for only two years it seems that the medical system is crippled by the lack of authority to practice good medicine. Has your experience been different? Have you found any doctors who understand Classical EDS and associated issues and do you have any suggestions on how to deal with EDS and NHS?