The (not so old) Crocks Cafe -Part 2

formaldehyde_perfume

needing-help wrote: »

I'm sorry I didn't mean to make you feel bad it's just I'm still fairly new here plus your problems were a lot worse than mine.

I don't know what to do now. What if he refuses to refer her? Am I just over reacting and she is just bendier than normal?

Personally I would ask for a refferal to the closest childrens hospital with a rheumatology department, she may well just be bendy but there are other things about EDS that can be picked up from an early age, and someone specialising in children is going to know what to look for.

If your GP doesn't want to refer you then I would try and stay calm and ask him why, if there is no satisfactory reason then I wouldn't hesitate in going to another GP or even another practise. Being able to put your legs round your neck without hours of gymnastics training since birth (I'm thinking chinese circus style here) is abnormal enough to warrant further investigation, period.

Jojo_the_Tightfisted

sunnyone wrote: »

Your to old for DLA, you need to claim AA instead and it has no mobility element, DLA is only available up to age 65 and had two mobility and three care rates, AA just has two care rates.

Mty husband had a DEXA scan a few months ago, it takes ages to get the results unlike other scans.

My DEXA scan resulted in the lady carrying it out smiling and telling me there was absolutely nothing to worry about whilst I was there.


I instantly felt vindicated for nicking the milk out the fridge every morning when my mum was still in bed.


DD is off to the hospital for assessment for exactly the sort of things you refer to about your 7 year old. (Plus chest pains and fainting, and freezing cold hands and feet)

It took telling the GP that her father meets the criteria for Marfan's, but is in denial about it - and a different GP to usual, one that has seen me in a flare - to accept that there is most likely an issue due to connective tissues of some sort.

So we have to wait now.

Oh, and she has been referred to an orthodontist as her teeth are extremely crowded.

LameWolf

*Waves to everyone*

Mary-op welcome - ooh, upstairs loo! I remember having one of those; I used to go up and down the stairs on my bum!:D Lucky me, I live in a bungalow now.:T

Auntie Axe if only I had a spare room, you could come here for the interim.:( Mind you, you'd have to put up with the canine guests - I have Dilly the Westie coming for 2 nights on Friday.:D

mcculloch29

Hello, I thought I'd come over and join you as I'm a regular on the No Buying Toiletries thread here and also on the BBC's Ouch, this links my two worlds.
I've just posted some thoughts from MSE over on Ouch and they seem to be going down really well.
Things are really grinding us down in the Disabled community at the moment and we need all we can get to help us feel better.
I'll catch up with all your stories soon, I am sure, but for now, hello from me!

mary-op

Hi all and thanks for the warm welcome:j

sunnyone - I already receive low rate mobilty dla for epilepsy and have done for some time. When I phoned for more forms to update my situation the office didnt mention anything about not continuing with dla so I'm under the assumption that as it was granted several years ago it would carry on.
All seems very complicated to me but least age concern are helping with the forms so I get it all done right.

lamewolf - a bungalow...........oh what bliss ! Trouble is round here they're so expensive for some reason, plus we love our home and want to stay in it as long as possible. We know one day we'll have to downsize to somewhere else but think I''ll cross that bridge when I get to it.

Sorted out my walking frame to make trips from one room to the other a bit easier.........neighbours daughter mad a door hanger at school and gave it to me...........it's got several pockets in it so I've hung it on my frame and if I want to spend the morning card making I can gather up my stuff and get it to the kitchen table a lot easier:T

Least I had a good nights sleep last night - helps me cope with the day............:)

Have a good day all:)

mcculloch29

I know I don't know you very well, but I thought I'd share some good news. I have hemiplegia - quite mild, just affects my left leg, it's a form of cerebral palsy. I also have arthritis which is not so mild, and I do get DLA - higher rate mobility, also disabled persons working tax credit.
I've been struggling with my bed for years, the mattress is shot and it's difficult to get out of.
I just took a phone call from Argos, my new electric adjustable bed with memory foam mattress is arriving Wednesday.
I've had such poor quality sleep for so long I won't know what's hit me. Woo-hoo!

Jojo_the_Tightfisted

mcculloch29 wrote: »

I've been struggling with my bed for years, the mattress is shot and it's difficult to get out of.
I just took a phone call from Argos, my new electric adjustable bed with memory foam mattress is arriving Wednesday.
I've had such poor quality sleep for so long I won't know what's hit me. Woo-hoo!

How wonderful!

My only comment would be that you might find it a bit strange at first, maybe get a few aches and pains which you didn't have before, that kind of thing.

But that is perfectly normal, as you are properly supported for the first time in years - if you were to go back onto your old bed after about 3 days, you would scream 'I want my new bed back NOW!!!'


I couldn't afford a new bed, so I got a cheapish memory foam topper. It took me three nights to get used to it. So nice not waking up through the night with hip pain.

My boyfriend, however, would moan and groan and bi-tch about it incessantly - it was too hot, it was too cold, it didn't support him, he could feel all the springs through it, if i didn't bin it he would go and spend every night in his flat, blah blah blah. So I took it off without telling him (and planned the superstrong meds to allow for the night I would have as a result).

You would not believe how he moaned that following morning about he had always hated the topper and the last night was the final straw. I told him to go and get it then.

Wish I had a camera for the look on his face when he took the base sheet off to realise it wasn't there.

I never did tell him that it had only been off for the night. He still thinks he had been sleeping without it for weeks.

*******



However, you may just sleep for hours and hours every day for the next few weeks, making up for the bad times instead!

Elle7

Hi I'm really sorry to interupt, but I wondered if anyone here is taking lyrica? I think it's called pregabalin usually, but I'm forgetful

I started taking 75mg three times a day on Friday, and I'm having it gradually raised to maximum dose over the next three weeks.

At the moment I've found i get bright red cheeks when I take the middle dose, and ive had a few odd feelings in my legs, but its been okay.

I also find my legs go numb very often...this has been happening before I started the medication, but I forgot to mention it at the doctors. It happens several times a day, whether I am lying down, sitting up or standing. It tends to happen to both legs at the same time, too...is this a new fibro symptom?

Thanks everyone x

Jojo_the_Tightfisted

Elle7 wrote: »

Hi I'm really sorry to interupt, but I wondered if anyone here is taking lyrica? I think it's called pregabalin usually, but I'm forgetful

I started taking 75mg three times a day on Friday, and I'm having it gradually raised to maximum dose over the next three weeks.

At the moment I've found i get bright red cheeks when I take the middle dose, and ive had a few odd feelings in my legs, but its been okay.

I also find my legs go numb very often...this has been happening before I started the medication, but I forgot to mention it at the doctors. It happens several times a day, whether I am lying down, sitting up or standing. It tends to happen to both legs at the same time, too...is this a new fibro symptom?

Thanks everyone x

Bit too close to medical advice, I think - but it would be a very good idea to tell the GP about numbness, so they can decide whether it is 'just' fibro or not.

sunnyone

mary-op wrote: »

Hi all and thanks for the warm welcome:j

sunnyone - I already receive low rate mobilty dla for epilepsy and have done for some time. When I phoned for more forms to update my situation the office didnt mention anything about not continuing with dla so I'm under the assumption that as it was granted several years ago it would carry on.
All seems very complicated to me but least age concern are helping with the forms so I get it all done right.

You can continue to recieve low rate mobility for your epilepcy post 65 because it was awarder before you were 65 but it cant be uprated to high rate mobility because your over 65, you care rate can be uprated if you already get a care rate of DLA but if you dont it will be AA for care and low rate mobility for epilepcy.