Hypermobility help

GlasweJen

Djonma wrote: »

Umm... I have legs.
Nicola

Duh! The only certain criteria for an award of DLA are having no legs (high mobility) or being deafblind (also high mobility if above 100% sight loss and 80% disabled due to hearing loss).
Every single other person who gets DLA gets it because they have care or mobility needs (or both), the decision makers don't care what condition you have they care about wether you can get up in the morning and function for a day or if you can walk the length of yourself or if you're a danger going out.

Example I have a neurological disorder and so does my sister. I get middle care and low mobility, sister gets low care low mobility. Reasons being is that I'm worse affected than she is. Now someone I know through a support group gets no DLA even though she has the same symptoms as my sister at roughly the same severity, the reason for no DLA is that she doesn't need the same amount of help as my sister. Now I wouldn't turn round and say "oh you can get DLA for having NCS" because you can't. You can however get DLA if you need help going to the toilet/can't prep a meal for yourself/can't get yourself up in the morning/can't get yourself to bed at night/can't shower yourself/can't feed yourself, you get the picture.

DLA is not ever awarded just on diagnosis of a medical condition except the 2 above and certain cancers when they get terminal.

serenity79

I know what you mean about the dislocations happening doing the most mundane thing. I dislocated my shoulder almost a month ago just turning over in bed, and I've also dislocated two toes simply from the weight of the bedcovers on them Today I subluxed my thumb by throwing some rubbish in the bin. Normally I can put everything back myself, although I did go to A&E about my shoulder as even though I'd got it back in, it was still very misshapen. X-Ray showed I had got it back in, but the Doctor said there was a lot of soft tissue damage. As I type, it's still not fully settled back into place

Got some good news today though, got a phonecall to say I'm getting my new wheelchair on Monday! The one I'm using at the minute is on loan from the Red Cross but my chair from the OT is finally ready. It'll be nice to have one properly sized and fitted for me, the one I've got now is just that little bit too big for me, which makes getting about a little more awkward. I'm gonna be streamlined! It's just a manual, and one that my husband can push around as there's no way I can push it myself and my car isn't big enough to fit a powerchair.

cara09

Both me and my partner have Hypermobility Syndrome. I know that may seem strange as it is a rare condition! My partner has it really bad with ME, Arthritis in his neck, prolapsed discs, IBS to name a few of his problems. He started work a couple of months ago after being off work for 3 years because of his health. Since starting work his condition has got alot worse again.

He has tried to get DLA in the past when he could only get around on crutches for a over a year and he was refused! Can anyone give advise in getting DLA when you have EDS/HMS as he should definately get it in his condition but he was fobbed off and even had to got to Tribunal which was very stressful.

Trialia

Actually, hypermobility isn't all that rare - it's just the severity that is uncommon for some of us. Hence the appended 'syndrome', for the secondary aspects.

Mostly, the criterion for getting mobility DLA with hypermobility syndrome has to do with the "severe discomfort" rule. If your partner is in chronic pain, as most of us with HMS or h-EDS are, then focus on that for that part.

SingleSue

They now think that I have HMS...and have had it for absolute years. I have always been hypermobile (I was a dancer, it came in very handy) and of course pain but I always put it down to over doing it a bit..very easy when you train hours and hours a day...so I thought it was just plain hypermobility rather than HMS.

Eldest def does have HMS (and possibly EDS or Marfans) as does youngest, middle son is hypermobile but without the pain and extra bits, ex hubby was also hypermobile (he would do the full lotus to my foot being telephone as if we were in competition..I would then trump him with the backs of my hands on the floor bending over, he could never beat that).

The only one who receives DLA is youngest but the HMS is the least of his problems....me and eldest have not even bothered to claim.

MARKZ123

MARKZ123 wrote: »

well i have just had an appointment with a different DR at the surgery today, she seemed a lot nicer and even listened and even knew a bit about HMS / EDS. one of the thing i wanted her to check was my rectal prolapse ! (only minor) she didnt seem to know about the connection with hms/eds so asked if i could print out the info for her to see.which ive now done. ive got my appt through for physio on 12/4 and next biomechanic appt in 6 weeks. she told me to see how physio goes and to go from there.
i think ill wait until i ask for referral to see prof g.

Well ive now had my first physio assesment appointment it went quite well the lady knew quite a bit about hms, she said she would only be able to teach me how to manage the problem rather than cure it, she even mentioned university college hospital london, for the future. she then took notes on all my problems from head to toe.one scary bit though was when she said things will probably get worse before they get better..

next biomechanic appointment next monday (this time i will be prepared with lots of questions)

thanks everyone for any advice youve given

MARKZ123

well i had my second appointment today with the biomechanic, it went very well, but because id had no improvement in the last month he insisted i was referred to prof grahame at uch london. because he said until i get i firm diagnosis he cant proceed with sorting my foot out...he said if it is confirmed eds he cant operate on my foot.

serenity79

I'm really pleased you're finally getting a referral to Professor G, he really is the best man to see in this situation.

I've got a DLA medical on Wednesday for my claim, I'm so nervous already. I fell over today and twisted my ankle and have bruised and swollen my toes and just below them, and I can hardly put any weight on my foot. I'm kind of concerned about the medical now, will the doctor try and make me walk anyway? (not that I can go very far at the best of times). I'm worried they'll think I'm trying to shirk the walking test or something. I'm already stressed enough about it all without worrying about this as well!!

Djonma

Great News Mark :-)

Serenity, show him your ankle. Explain that it's a problem of your condition! If he tries to make you walk, tell him you can't!
It's almost ideal that something bad's happened when you have to see the doctor. I always end up having one of my best days of the year... typical!

I'm filling in my forms for renewal at the moment. I've had seizures as well since December.. try having a full convulsive seizure with EDS... 100's of dislocations in just a few minutes!
It has been SO nasty.
I need 24 hour supervision now because of them, and because of how badly they affect my EDS.
Also they sometimes come on so quickly I can't get myself to safety... like sometimes I'll feel it coming on and can get to the bed... but sometimes I just drop to the floor.
I had a very nasty hip dislocation a month or so ago when I had 2 1/2 hours of constant on off seizures... dislocated my hip.. and continued to have an hour or so of seizures with it OUT of joint.
It's still very, very bad. I'm thinking of going to see my doctor about it soon as it's still so painful.
I get SO scared when I'm filling in my DLA forms... I always panic that they'll take it all away and say I'm faking it all or something (when the doctors couldn't work out what was wrong with me when I was young, they told my parents I was making it up and seeking attention!).. the thought of losing that money terrifies me.
Especially now I'm so ill, and I have chronic low blood sugar now that's being investigated... maybe insulin resistance... which my Mum had before getting diabetes.

It's all such a mess!
I need help so badly and I'm terrified they'll take it all away!

shays_mum

Djonma, why don't you get your local DIAL or disability advice group (usually run thru your council) to help you & take some of the strain/worry. I have eds3 & i know where your coming from, so sorry to hear about how bad its got
Mark, well done you!, i got my physio & bio mechanics happening soon hooray atlast!!, my only worry is my tendinitis on my foot bursting before they can do anything practical, i live in hope!....to the rest of you bendies, hope your ok x