This was the first forum I turned to when I started having a collection of odd symptoms in 2012. It has been a crazy journey so far and along the way I have picked up diagnoses of Functional Neurological Disorder, Chronic Fatigue Syndrome (a symptom really rather than a separate condition) and just yesterday, a diagnosis of Joint Hypermobility Syndrome which may be Ehlers-Danlos Syndrome.
I’m currently awaiting a third neurology appointment (because an fMRI done whilst taking part in a research project showed some structural changes) and awaiting a rheumatology appointment for the hypermobility syndrome.
Why am I still posting here then? Because I do not feel that after one MRI, MS has been completely ruled out. In EDS, there is a tendency to be prone to MS. I need to be certain. Also, I hope that my experience might be helpful to someone. I’ve had to be persistent and informed and my GP thinks that we might finally be getting somewhere.
I’m so grateful to all on here that encouraged me to stay strong and look for answers, to become educated about my symptoms and the conditions that have been brought to light. I have learned how important self-advocacy is but to balance that with good relations with the medical professionals who really are doing their best to help, some more successfully than others. Wishing you clarity