I'm really sorry for posting in EDS but I couldn't find another forum similar, and I know certain EDS types are the same as HMS (think EDS3?).
My physio has "diagnosed" me with HMS about 5 years ago, with a score of 8 out of 9 I think it was but it was tat long ago I can't remember! I am ridiculously bendy. 5-6 years ago I dislocated my shoulder in my sleep and battled countless medical professionals to insist I had done it in my sleep (they were adamant I must have done an injury like contact sports or something). For 5 years I did my physio, core strength, shoulder exercises and had my scans. Scans were all clear except showing it was exceptionally loose in the joint.
My original Consultant was rather dismissive, told me my options were to "get on with it", exploratory surgery or 2nd opinion - and by the time he'd finished listing these options he decided "no I'll withdraw the exploratory surgery option because we won't find anything". I went with 2nd opinion and had a fabulous Consultant who really understood HMS. He did my Beighton test, looked at all my other joints and then focussed on my problem shoulder. He then said about the stabilising surgery (Bankart Stanmore Type III) which I opted for. I knew with my condition that surgery is never the nest option but it had been 5 years and it ruddy hurt - I couldn't open cupboards let alone doors with that side. I thought it would either work or it wont.
After the surgery he came round with a huge grin on his face - said the stabilising had gone well however they had found a "huge labrum tear posterior" and that it was dislocating at the back and not the front like we had suspected. Cue me wearing a ridiculous sling for 4 weeks (hell!). However - it has worked. I already am on less painkillers and my range of movement is already fantastic. Don't get me wrong I am about 10 weeks post-op so there's still a long way to go and I'm developing frozen shoulder - however we think it's due to my shoulder being in a problem position for 5 years and it's been fixed so it's one of those things. Even with the frozen shoulder I can move it better.
I am chuffed. However I wondered how I go about seeing a Rheumo? I've seen people posting in here about it but I don't know how to request one. I've never seen one and I want them to properly say it's HMS or EDS type whatever. Everytime I see a medical profession I have to say "Hyper Mobile Joints" because no one has ever told me it's HMS or EDS. I get tired a lot faster and my joints wear out (in terms of fatigue) a lot quicker than everyone elses - they bend all over the place and I have to consciously try and make sure they don't hyper-extend which is a chore on it own. After walks my hips are agony, and them plus a lot of my other joints click and grind if they're not sat properly in the joint.
I'm doing physio and the physio I see for my shoulder is fantastic - she really understands the condition and always tells me when to stop something (like my shoulder excercises, she knows I can't tell when the shoulder is "supposed" to stop). Can I ask her to refer me just so I have it on paper and can stop being dismissed by certain medical profs all the time or do I request this via GP?
I'm the first in the family to have extensive problems with my joints properly seen to/diagnosed, however my Uncle was medically discharged from the Army because of his knee, my sister had horrendous problem with her knees and my Auntie has MS. My dad also has a variety of issues bless him and is having Spinal Surgery in a few weeks for nerve damage due to Sciatica (or something about calcified deposits?). So there's definitely something that runs in our family but there's only me who wants to be properly diagnosed so I can do the right physio and do what I can to prevent future problems (well, as much as possible).
Sorry to be so long winded. I do hope you're all okay and not suffering much today. Thank you so much to anyone who can offer help. xxx