Doctor's referral

hannahO_2

sunnyone wrote: »

You must live in a diffrent era to me then, I was diagnosed as a teenager and both my kids were diagnosed as young kids and every consultant we see understands the condition.

Diagnosis by wiki/internet is dangerous, its amazing how many people have self diagnosed rare conditions after reading about them online so you can understand why GP's refuse to just accept someones self diagnosis.

HMS/EDS seems to be a "fashonable" condition at present, its supposedly a rare condition yet every man/woman and their dog on the internet seems to have it.

Fashionable?! LOL
There are certain criteria you have to have such as extra bone growth inside of your mouth and very bendy joints as well as many other conditions due to defective collagen. I'm sure you've got those though. But if you haven't, someone else will come along and tell you how to grow that extra bone bit inside of your mouth. Don't ask me how long it takes for it to form. I had it since birth.

mazza111

sunnyone wrote: »

You must live in a diffrent era to me then, I was diagnosed as a teenager and both my kids were diagnosed as young kids and every consultant we see understands the condition.

Diagnosis by wiki/internet is dangerous, its amazing how many people have self diagnosed rare conditions after reading about them online so you can understand why GP's refuse to just accept someones self diagnosis.

HMS/EDS seems to be a "fashonable" condition at present, its supposedly a rare condition yet every man/woman and their dog on the internet seems to have it.

I'll be honest. They mentioned it when the dd was 8 and dislocated both ankles when diving. After a year of physio it was swept under the carpet. She had a relative normal childhood, probably more "sprains" or "growing pains" than a normal child. She's always been double jointed. She didn't have any more full dislocations until she was 20. Then when she broke her ankle just before her 21st, the HMS went into overdrive. Which they have said can happen with trauma or stress. Unfortunately, her records didn't come from Brighton when we moved back to Scotland for some reason, so she had to go through the process of diagnosis twice. I didn't diagnose my daughter, a junior doctor at Sussex County Hospital did. This was then confirmed by several physios and podiatrists. However, GPs still don't understand it.

Since then, myself and my niece have both been diagnosed.

You just need to look on the HMSA website to see how many people have problems getting diagnosed. I think the biggest problem is that they don't realise there's a difference between hypermobility and hypermobility syndrome. It's one thing we need to explain over and over again in the groups on facebook etc. I don't think it helps either that their are so many different names for the one thing. HMS, BJHMS, JHMS, EDS type 3 etc.

I can only suggest you've been lucky with your own diagnosis, and then knew what to look for in ur own children. As a not too bad bendy, I didn't have a clue.

I still don't think it's as rare as they would like us believe. I still think it's very much under diagnosed. There's at least a 2 year wait to see the top man in Scotland. Think that says a lot.

hannahO_2

I was lucky that someone on here mentioned hypermobility when I complained about whole host of symptoms. I've never heard such condition before. Double jointed is another thing. I read many things about EDS since then but never thought I had flat feet which my consultant quickly discovered. So if I didn't realise, I could have done further damage which means more painkillers, possibly clutches, unable to walk eventually etc.
I guess those that don't have the condition can't imagine difficulty it creates.

mazza111

Indeed Hannah. I had no idea that just being double jointed (hypermobile) could lead to so many other problems. I thought we were all just double jointed rather than having HMS. My lass is now in wheelchair about 80% of the time. She tries to walk as much as she can on her crutches to keep her muscle tone as good as she can, but alas everything came on so suddenly with her, no physio could make it better

DD scores 9/9 on the Beighton score.
I only score about 4, although previously a 9

Combined with the Brighton criteria, we're both HMS according to our own GPs/physios/ortho and podiatrists. Still on waiting list to see Prof and GRI though

hannahO_2

I thought many things like double jointed and bone lump in my mouth was normal. It's not a sort of things you talk about with people

I'm sorry to hear about your DD. 80% of the time on wheelchair? :eek: That's not good. I take it she's very fatigued and not got muscle strength? Waiting is the worst bit but consultants are good and thorough so you will have peace of mind once you she them.

I'll PM you with extra

mazza111

She'll get there hon. Could probably get referral to London faster than Glasgow. We only have one doc up here who specialises in it. And only sees 3-4 patients a month, because he does it alongside his normal clinic in his own time.

Yes the muscle wastage happened when she had broken her ankle. 5.5 months in cast on her right ankle while being braced against a dislocated knee on her left. She's still trying to get up and about on her crutches, but often it's easier to use the wheelchair, especially when the fatigue hits. Easier to do her housework in chair too

She's back on the exercise bike from tomorrow. Try and build some strength up again.

sunnyone

mazza111 wrote: »

I'll be honest. They mentioned it when the dd was 8 and dislocated both ankles when diving. After a year of physio it was swept under the carpet. She had a relative normal childhood, probably more "sprains" or "growing pains" than a normal child. She's always been double jointed. She didn't have any more full dislocations until she was 20. Then when she broke her ankle just before her 21st, the HMS went into overdrive. Which they have said can happen with trauma or stress. Unfortunately, her records didn't come from Brighton when we moved back to Scotland for some reason, so she had to go through the process of diagnosis twice. I didn't diagnose my daughter, a junior doctor at Sussex County Hospital did. This was then confirmed by several physios and podiatrists. However, GPs still don't understand it.

Since then, myself and my niece have both been diagnosed.

You just need to look on the HMSA website to see how many people have problems getting diagnosed. I think the biggest problem is that they don't realise there's a difference between hypermobility and hypermobility syndrome. It's one thing we need to explain over and over again in the groups on facebook etc. I don't think it helps either that their are so many different names for the one thing. HMS, BJHMS, JHMS, EDS type 3 etc.

I can only suggest you've been lucky with your own diagnosis, and then knew what to look for in ur own children. As a not too bad bendy, I didn't have a clue.

I still don't think it's as rare as they would like us believe. I still think it's very much under diagnosed. There's at least a 2 year wait to see the top man in Scotland. Think that says a lot.

I wasnt accusing you of diagnosis by wiki mazza but it does seem that loads and loads of people self diagnose HMS/EDS which is borne out by the HMSA web site it self where many people self diagnose, join the site and then are not diagnosed with the condition despite going to a specialist center in many cases.

If the prof says you dont have HMS/EDS, you certainly dont have it!