I’m sorry it’s taken me until now to reply. Barbara, my first thoughts in reading your comments are that it’s very possible you may be hypermobile as it’s common as a child to have the hypermobility and then to tighten up as an adult (although some of us also continue dislocating/subluxating). I can’t believe you had such a bad experience with the Neuro, but I have also had some terrible comments from Specialists who when I tell them I have EDS, have no idea what it is, let alone what it means. When you mention dropping things, that sounds possibly like a tremor, worth checking out as that was how I felt something was wrong and the first thing I mentioned to my Neuro before my terminal tremor was diagnosed.
Caroline, I wonder if you would consider talking with your Dr about B12 injections? I have been on them for 9weeks and it has solved all night time bladder issues. I have previously been on vesicare for a year to prevent getting up every 15mins to urinate and the B12 has really settled this (but I only went on it for energy increase). B12 has also improved my brain fog. It’s worth a try…
Opuntia, my spasms over Dec/Jan were really bad and I didn’t realise that the medication I was taking I was allergic to, so it was causing some really bad problems (which is why I have taken until now to respond). I’m now on another med that I take just as needed. The spasms still come but have settled so contractures don’t come during the night, just spasms during the day. My right shoulder is now fully dislocated (just waiting on xray to confirm) but can’t put it back in as it’s a very old shoulder!. It’s my dominant side and the side of all my spasms. Have been researching surgery and the info is not good for EDS. I now feel constant spasms from the shoulder down the arm but it’s manageable, in a tight sling which is great. Hope you’re all doing OK as well. Lisa