Hi everyone. I am following a path (hopefully) to diagnosis..It has been a very long journey where I have been diagnosed and undiagnosed with MS.Diagnosed with fibromyalgia, and have many symptoms left hanging in the air,some of those being severe enough to hospitalise me several times over the years with no conclusion..and I live half a life due to illness,pain and disability which wax and wanes.
Along this journey I have had to do my own research (credible sources) and become vigilante with doctor/specialist appointments..I am aware diagnosis can sometimes be difficult with overlapping conditions making it tricky. But with Some doctors/ specialist attitudes making us feel demoralised,It can be an awful existence pre-diagnosis..I have withdrawn from pursuing diagnosis many times over the years because of the added stress and strain it has brought..
After recently trying to join the dots of my symptoms (doctors and specialists seldom do) I find I am looking at another condition,that being the vascular form of Ehlers Danlos syndrome (I have now posted on the EDS community) and I feel I have a foot in both camps.My medical history and symptoms appears to fit EDS, but so do many fit with some forms of vasculitis.
I am due to see a rheumatologist at Manchester Royal next week for my follow up appointment,and I am planning to raise my concern (and depending how it goes) ask for a referral to a geneticist who can diagnose EDS. I am not only concerned for myself, but my son also experiences many of the same symptoms and fits the EDS criteria, and he was diagnosed with ME some years ago..
Because my research has taken me to the possibility of a different condition,so much hangs on this next appointment as I hope it leads me closer to the answers..not now just for myself, the priority(as always) is my son..
Thank you and best wishes.