That was a good read janieg.

Health girl I am in the same boat as you. I've seen an EDS specialist. I have hypermobility but he is not calling it eds. I am on the periphery of eds he said, I basically need one more thing to go wrong and then it will be official or guess. I have all the signs including very stretchy skin, hyper flexible spine, legs, orthostatic intolerance, loads of digestion problems etc.

But, the guy I saw, who is well known and works in a specialist hypermobility unit believes all my neuropathies are not directly related to eds. He doesn't see people with EDS present like me. My sfn is head to toe also and horrific. It came on acutely after I had a child. He believes it is another issue in the context of hypermobility. I always felt this as I don't believe nerves just spontaneously combust in that fashion with a genetic defect you always had.

We talked about trying other types of immune suppression. He is writing to my neurologist as he has sadly highlighted the fact that my muscle wasting is bad and it is affecting all limbs.

Has no consultant ever suggested trying some sort of immune suppression?