Asking for Diagnosis

[mazza111]

Hi guys, parent of a non diagnosed here. About 90% sure she has HMS and looking for a wee bit of advice. Did register for the forums a few days ago but it's took a wee while to get activate. We have an appointment at fracture clinic in the morning. Was hoping someone may be able to advise before then


Darling daughter has had problems with various bits and pieces popping out over the years, sometimes painful, sometimes just feeling a little sprained. When she was 8 she dislocated both ankles while springboard diving. Junior doc told her she would be in a wheelchair by the time she was 30. I was so shocked and angry that he said this to an 8 year old I didn't think to ask the big why question. Anyhoo. Throughout her teenage years, more pops in and out, without too many problems, a bit of pain, nothing unmanageable until she hit 20 years old. In June last year, the right knee dislocated. Visited A&E, got bracing, and awaited a physio appointment that never appeared. October, spiral fracture (not healed yet ) Then 2 weeks ago, a dislocation of the opposite knee while she was sleeping. Also been diagnosed as having Sciatica, wondering if this could be something to do with the HMS too. A&E have asked fracture clinic to check out all her joints tomorrow.


Now, my couple of questions are....


Is it worth me pushing to see a Rheumatologist to get a diagnosis?
Is it normal for a knee to dislocate whilst being asleep?
Does a fracture normally take this long to heal in someone who has HMS?


Sorry to bombard you all with questions. I just know I want to get her some help. More so with the dislocations. Pretty sure the fracture will heal (eventually hopefully, gone past 5 months already )

Thanks for any advice you can give.

[madmum]

Yes,yes and yes. I would want a blood test for osteopaenia which is similar to osteoporosis. Sciatica is often due to spine problems. These also can be common. We are often slow to heal as we are already stretchy and we do tiny injuries every day as our joints move further than normal. My son is 12 and he was told about 18months ago without intensive physio he would be in a wheelchair by now. He did it and last october was in a winning routine with his marching band. Well done you for your support of your daughter. Good luck and do not be put off. Let us know how you get on.

[mazza111]

Thanks ever so much madmum. Really appreciate it. One other thing I meant to ask, and I don't know if it's related to HMS IF it's something like HMS that Stacey has, but she has rather bad psoriasis. And wasn't sure if it was related or not, yes she has the visible veins and it takes a while for her skin to heal, scars and bruises easily, has a few stretch marks too, but wasn't sure about the psoriasis. Thought I might as well ask you guys so I can arm myself with information tomorrow.

Got a 9:20 appointment at the derma clinic, then a 10:20 one at fracture clinic. Joy oh joy.

The more I read, the more sure I am that she has some form of HMS. I thank you all for sharing your experiences. It does make things easier for newbies. I had never heard of HMS. Apart from docs telling her she had hypermobile joints, didn't realise it would have come to this. Looking back on family history, and although it's never been diagnosed. My mother was always popping things, and my knees were always doing the same. Thankfully only my knees.

I'm feeling much better about going to the fracture clinic tomorrow armed with some info. Even if they don't diagnose her, we should be able to get a referral to the rheumatologist sometime this week, either through the fracture clinic or the GP.

[mazza111]

Had a wee bit of good news and bad news today:


First appointment was at derma clinic. They don't think there's any link to Psoriasis in patients with HMS. The bad news came that she has to be admitted for treatment for her skin. Which means a fortnight in hospital.


So off we go to the fracture clinic. She can start to wean herself off the cast. Starting with an hour a day using her crutches and normal shoe

Mentioned about her dislocated her knee as he'd had no word from A&E Got told off because A&E didn't make a separate appointment for her knee. I knew as soon as I saw the doc that I shouldn't have mentioned HMS. He examines her knees and said "yes, mumble mumble, very mobile, she'll grow out of it, mumble, won't do her any long term harm" So I bit the bullet and mentioned that another doctor had said she possibly had HMS, and he went off mumbling again, saying being mobile isn't a bad thing etc etc etc.


Will now take her to GP and push for a referral to see a rheumatologist, unfortunately this may not be for a few weeks as we're waiting for the hospital calling to admit her at any time.

[Purplesheep]

It might be worth mentioning HEDS (Hypermobility Type Ehlers-Danlos Syndrome) instead of HMS to doctors. They are the same condition, but EDS tends to get taken a lot more seriously, whereas with HMS you frequently find healthcare professionals who don't think it's a real condition and don't understand that it's not the same at all as being just a bit flexible. We've all had some of those, I think Getting an EDS diagnosis can be quite difficult because many doctors believe it's too rare/serious, but it does help in getting people to at least believe you once you got it.

I hope Stacey can get a diagnosis and help soon! Also of course, welcome to the board!

[mazza111]

Thanks Purplesheep.

She got admitted to derma hospital today. Wax bathed, covered in paraffin and bandaged like a mummy.

Asked if I could take her to see her GP on Thursday and FPC on following Monday and take her straight back to hospital, but they've said no. Asked if there was a rheumatology department in that hospital and the answer was no. So I guess we'll need to wait a few weeks and try for another appointment for the nice GP in her practice.


She's tried walking without the aircast, but is in terrible pain without it, so we've had to cut her time down to short bursts, but maybe if she's in the hospital at least she's on flat ground if you know what I mean, less chance of damaging the knees on flat ground rather than trying to hobble on the one that was broken. So told her to try and go to the bathroom without her cast, just to put her trainers on and not those stupid slippers the kids all like to wear, you know the ones I mean, look like boots and have absolutely no support in them whatsoever. Get her skin sorted out then push on for the rheumy appointment


Just a big thanks to everyone on here for sharing their experiences. It's been a great help to know that she's not alone.

[madmum]

Wish your daughter better soon,by the way psorisis can have a rheumatoid arthritis link.

[trekster]

Welcome to the world of bendiness

to the doctors that dont get HEDS. i got my diagnosis over 18 months after sheppey (a member on here)
suggested i fitted a number of the criterion. Have you checked out the beignton and brighton scales and shown them to
a doctor? Under the NHS 'patient choice' means you can choose which hospital to see your specialise (except for MH and a
few other problems).

Good luck with trying to get a diagnosis for your daughter. You might also want to check out psorasic arthritis as i think that
can be the link madmum mentions.

[mazza111]

Thanks guys, yeah knew about the rheumy/psoriasis link.

So do you think the best way is to take a print out of the beighton/brighton score thing with me to GP?

Just hate that they think you're looking up everything on the internet. Looking back on my mum in her earlier days it's possible she had HMS/EDS. Usually bendiness you all describe. Got told it was growing pains all through her life. Now crippled with arthritis, both ostio and rheumatoid.

Again, appreciate everyone's input.

Seems my son has inherited the allergy thing in our family, where he's allergic to penicillin, gets hayfever, lactose intolerant and the daughter has the bendy/joint pains and psoriasis.

Gotta love genetics haven't you

[madmum]

Allergies are also a frequent occurance in hms. My son is lactose as well as hayfever and cannot have sorbitol,ibuprofen,piriton and cocodamol. He also has ibs. Your family sound like mine,we all have issues and my mum who is nearly 70 has been diagnosed as hms!

[mazza111]

Thankfully my son is not HMS madmum. Well he has a few wobbles, but nothing like Stacey. Thankfully!!!! Stacey's allergic to nothing, but has everything wobbling. She said her elbows don't, but she could feel them slipping when she was non weight bearing on the crutches.

Day 3 in hospital now and they've started her on Tar treatment, which was earlier than they thought, so hopefully she won't be in as long as they thought. Her skin is looking much better already, although still a long way to go.

It's amazing the amount of medications that have lactose in them. As a baby he was prescribed vitamins by a dietician, as you've probably already guessed, they had lactose in them

I've been really lucky myself given that it's only my knees that are wobbly

[anna]

Hi and welcome. In answer to your original questions - yes yes and yes - and I have to say, I've seen nothing that you have commented on that might not be heds related. Once you get a good consultant on your side - (NOT one that is stupid enough to think heds goes away with age or that hypermobility must be a good thing- derrrrr, where do they train these people??) you will start to get a picture of how to proceed I hope. If it's any comfort, at least your daughter is in her twenties, not her fifties, so some things eg if there's osteopaenia, can be treated early. I wish you both the best of luck

[mazza111]

Thnx Anna.

Had a look at link on what people with HMS can do without effort. The only thing she can't do now is put both hands on the floor, she could when she was younger, but the last year with the dislocations and breaks, she's put on a bit of weight (too much if I'm totally honest), now the belly gets in the way. I've tried to talk her into a better diet, tried to encourage her with swimming, but you know what their like at 21, know all and know nothing. I'm going to keep nagging her though, because I'm sure the extra weight can't be doing her any good at all. Maybe when she gets out of hospital, we can start a healthy eating plan together, god knows I could do with losing a few pounds too. The mood swings she gets are unbelievable though, she sent me packing last night from the hospital, so haven't been to visit her today, we have a clash of personalities and when she's in one of those moods, there's just no way we should be together. We've been talking today on facebook and it's been a lot calmer, so may visit her tomorrow.

Skin has shown a massive improvement and they are moving her onto a stronger tar mix tomorrow. Hopefully it won't take the full 2-3 weeks that they originally anticipated.

[madmum]

Pleased to hear your daughter is improving. Hope she can get help with hms soon. You are a good mum and no doubt she knows it. Sadly pain and not being able to do normal things do make us ratty. I sometimes clash with my mum but she is a diamond and has supported me and my son so much. We are all here for you and your daughter. Please send our love to her, Gentle hugs to you and the whole family.

[mazza111]

Thanks madmum, just get so frustrated with her when she doesn't do enough to help herself. Supposed to be weaning herself off the aircast, so told her to start with walks to the toilet. Still too sore, of course my nagging doesn't help Have asked her if she needs anything brought over to hospital tonight, but no reply as yet. A case of watch this space lol. I'm sure we'll get there, we're just a pair of stubborn mares.