Did you only get diagnosed because of your kids?

[mami2four]

Hi I am just curious about this but did any of you only get diagnosed after your kids did?

My seven year old was recently diagnosed and after looking through all the info and reading the threads here I'm starting to realise that what I class as normal as I can do them and so can my kids so obviously isn't lol.
I even had my mum apologise to me recently as she's always thought the majority of all my aches and pains as a teenager was just hypochondria or attention seeking even though I spent 2 years in and out of a plaster cast with chronic tendonitis.
PLUS she has also realised that she has many symptoms of HMS and so does her mother, brother(who has had quite a few ops to stop shoulders and knees falling off) and my cousin.

We are still having a fighting battle to get Lili-Mair seen by the right people so I'm not in any rush to get an official diagnosis yet and the other 3 kids only seem to have very minor symptoms, but at least I now know why so many bits of me hurt, crunch or feel like their loose and it's not all just in my head

Katie

[tireesix]

I got diagnosed before the kids, they got diagnosed after because I knew something was wrong with them.

Katie.

[Alison C]

I was diagnosed at the same time as my first child! Thank you Prof G!

Alison

[roqchiq]

I only got diagnosed because my mum did.

She started getting back/shoulder pain and her physio suspected HMS. Once mum had been diagnosed and started doing some research she realised that HMS was probably the cause of the pain I'd had since my teens - and it was!

[elliejay]

Yes I am actually still waiting for an official diagnosis (seeing Dr Jenkinson next week)
Both my daughters have been diagnosed with HMS in their 30s and now we know then everything fits into place
They have worse problems than me with constant dislocations, but now I know why I have TMJ problems, sublux ribs,have dislocated my knees, have a ruptured ACL, pulled achilles tendon, plantar fasciitis, neck clicking, migraines, palpitations..........!
No-one has ever bothered to look at the whole picture.
I have been given pain killers, NSAIDs and methotrexate and leflunomide for psoriatic arthritis (don't have psoriasis or any family history)
My grandchildren (aged 4 and 9months) are already showing signs of HMS in fact the yougest was diagnosed and treated for club foot when she was born, turned out to be hypermobility.
And now we can see that lots of the problems my mum has(she is 82) could be HMS, she was a champion high jumper and triple jumper in her youth and she can still put her hands flat on the floor without bending her knees.
So wish me luck for a proper diagnosis, too late for lots of already damaged joints but hopefully some positive help.
Ellie

[mami2four]

Hi all

No-one has ever bothered to look at the whole picture.

That is just so true! All our family have been back and forth over the years with all these different aches and pains and differnt problems and not one of our dr's has taken a step back and thought about everything together and it takes one little seven year old to make the penny drop for 3 generations lol

Katie

[Lainey]

When I was diagnosed, my mum was with me. The Rheumatologist explained that it is a hereditary condition and ran through the Beighton Criteria with my mum too. She scored quite highly too. I doubt my mum would have been diagnosed if it hadn't been for my diagnosis

Lainey

[christianne]

Hi
IN my family it was my sister first (finally dxed as an adult after years of trouble since her teens and being passed from pillar to post etc, common story with HMS!). Then my teenaged daughter followed by my son,then me, my niece and then my eldest daughter. I kind of knew I had it way before I actually got dxed and ignored it(partly in denial),and in the end decided to ask for a dx for myself at an appointment for my daughter because my own condition had worsened. As you all say, often it takes one person to be dxed and then all the other problems in the family fall into place and make sense. I am so grateful that my sister was dxed otherwise we could still be searching for an answer!
Katie, good luck with getting Lili-Mair seen by people who can help her. Where was she dxed? Gosh have a good team for kids.
Christianne

[mami2four]

Hi Christianne
She was dxed in the Princess of Wales hosp, Bridgend. I really had to pester the ortho dr for it tho and he refused to refer on to rhuemy even though she has the skin signs, high palette, dental crowding and other bits of HEDS, when I mentioned it he just said "well I wouldn't know anything about that" One of the better GP's in our surgery has written back to him asking for a referral tho.
It's been so hard just getting her seen for local things I dread to think how hard it'll be to get referred to GOSH

Katie

[elliejay]

Hi Katie
I'm just gathering up info to present to rheumy on thursday.
Didn't know about the high palette and dental crowding, I have both.
What are the typical skin signs that you mention ?
Ellie

[mami2four]

Hi Ellie,
I'm not an expert but as far as I know soft, velvety, stretchy skin, very easy to bruise and abnormal scars are the big signs(there may be others).
Lili-Mair's always covered in scratches and bruises and has split her chin open twice since she was 2 from quite minor bumps and her skin is soft and stretchy. She doesn't seem to have the unusual scarring bit though.

If you do a search I'm sure you can find out much more info. It's always good to have a list of all the things you need to tell dr's about. If I didn't I just know I'd forget half the things

Good luck with your appt thursday, hope it goes well and your dr is helpful

Katie

[elliejay]

Hi Katie, thanks for reply
Have got a few bruises I can show doc, no idea where they came from.
List is quite long now don't think I will get through it in allotted time.
Am hoping he will say stop and just give in to the pressure
Ellie

[isla77]

When I took my daughter to see prof G he asked about family history and I was convinced that the problems lay on her fathers side. Prof G asked me a few questions, saw I could touch the floor with my palms and told me I was in denial...
Oh my goodness, double whammy, but everything makes sense, from being in agony in every joint the day after gymnastics club, etc etc etc i could go on, I feel so foolish that I didn't see it before, and I'm a physiotherapist!!
We are still getting my daughter all the appointments she requires, then I may have to sit down and decide how to best manage myself!
My husband said.....' Now I understand why you are constantly complaining about all your joints and asking me to crack your back' .......
So yes I have yet to be officially diagnosed. I have tracked it back to my Dad, who always told me I was a hypochondriac, I guess that's what his dad called him. He W sat as a child and delayed walking as it was easier to get around sitting in the W position. The doctor told his mum he should wear boots as he kept spraining his ankles and he had constant gastric problems and anal prolapse. Having said that he is now 73 and has only been in hospital once last year(gastric problem) and he is doing remarkably well! He feels guilty about 'ignoring' my complaints as a child and has been supportive since my daughters diagnosis. I guess it's answered a few questions for him too!