Hypermobility-What if you were told....?

Trialia

ash4becks wrote: »

have you tryed to get refered to down london if they will not then would you do private for 200 but you can still get any treament via nhs after 1st app, i heard something about a 2 weeks of staying in hospitail doing intense physo and hydro down there , i been told they will refer me out if iam not happy with the reumy locally i no you have to fight for everything just annoying that you do but think you can under the gov right to be treated where you like think it would really help you

I did ask my last GP, but she said no. Newest says wait until they establish a clinic in Manchester because apparently they're going to, but she didn't say when.

I don't have £200 to spare, even for that. And unfortunately, London gives me panic attacks all by itself. Too closed in, too many people. I might be able to fight that if I could afford it, but I can't, so it's a moot point.

ash4becks

Trialia wrote: »

I did ask my last GP, but she said no. Newest says wait until they establish a clinic in Manchester because apparently they're going to, but she didn't say when.

I don't have £200 to spare, even for that. And unfortunately, London gives me panic attacks all by itself. Too closed in, too many people. I might be able to fight that if I could afford it, but I can't, so it's a moot point.

well the Q.E near newcastle where iam going is supposted to be setting one up doc has HMS himself
might be bit better than london i no what you mean though its a bit cramped everywhere you go , i would make it very clear that where you want to go would having someone with you not help thou or stay asked to be seen early or late in the day , hey if only you could go at 10pm like i do for shopping would be so much easyer for you tbh for the best treamtent to go down there would be hard but if the benifits outway the results then it would be worth it x

bluebluecow

Hugs Rolopolo, and ellebelle, I would swap gps if you could. When I moved Gps becuase of moving the 1st gp I saw said "oh you have hypermobility" Then he ran through the tests to see how I was.

I have just put my student grant form into my gps for equipment, I am hoping to get a laptop as struggle to write, so would help during lectures.

I have decided to stop being on benifit, Im on IB, and do a degree so I can work from home, so if my hmjs flares up I can rest more. I am doing Business management with accountancy degree, also my level 3 and 4 AAT, which is accounting training, so fingers crossed

Liz

SingleSue

There is also an EDS unit at Addenbrookes.....now waiting for us all to go up there after seeing an outreach geneticist connected to that unit at Ipswich hospital.

Trialia

SingleSue wrote: »

There is also an EDS unit at Addenbrookes.....now waiting for us all to go up there after seeing an outreach geneticist connected to that unit at Ipswich hospital.

Ah, Cambridge. Sadly not much nearer to me! Manchester PCT are a bit !!!! about these things. They don't want to refer you out of the area for anything if they can avoid it, or so I've found...

SingleSue

Yes unfortunately is....

Cambridge always seems quite close to us but in reality, it is a blooming good drive down the road!

shays_mum

Ellabella, i would try to change my gp. My gp wouldn't let me get a diagnosis for years, he kept saying " all your familiy has bad joints"!, in the end in severe pain i had a massive rant at him, threatening i would go to the pct all sorts - can't remember the half of it & it worked.
When i suspected my dd had eds3, i bypassed the gp & went to the health visitors (though she was 8) & told them i was concerned & the community paed saw me within a week - he was from the pct. The paeds said it went without saying that my daughter should be seen asap to ascertain how bad things were & what steps i needed to take to make things easier for her. He is coordinating all her care & even asked if i was been taken care of, or he would see to that as well!!
If your gp is c**p, bypass them!!
HTH

shays_mum

Trialia wrote: »

rolopolo, unfortunately with severe hypermobility syndrome - more or less synonymous with hypermobility type Ehlers-Danlos syndrome - it is very hard to get decent help in this country. There are only two NHS connective tissue clinics as far as I know and the expert belonging to the clinic in Chapel Allerton, near Leeds, is retiring at the end of September. The other is at Guy's. So... trouble. Because a good many PCTs won't refer people that far out of area.

Hi Trialia,
Didn't know there was one at Guys??!, is this connected to UCH?, thanks!

shays_mum

rolopolo wrote: »

I was very interested to read this thread. My youngest daughter was diagnosed with hypermobility about four years ago. I felt guilty when she was diagnosed because I used to get frustrated when she would complain about pain even when she had a tiny knock. When I found out that she was experiencing more pain than other people would it made me feel really guilty.

She wears orthotics in her shoes to stop help her walk and will have to continue to wear them through being a teenager. Luckily she is a tomboy and not interested in girlie shoes so hopefully she will continue to wear them.

I was so sorry to read about other's experiences with the pain cause by hypermobility. Luckily my daughter's pain is very minor and doesn't happen too often.

I hadn't realised that hypermobility can lead to people experiencing so much pain. I hope you all get the help you need.

Hi Rolopolo,
There are many different types of hypermobility effecting all parts of the body, some effect major organs & can cause early death . From what i gather, you can have HM & not notice it apart from some pain here & there, you can be trained to be HM (dancers etc) & not feel pain & then there's the rest of us with pain & mobility problems that seem to go thru a 'boom & bust' phase, one day your semi-ok then you have a flare up, your body immobilises itself to stop movement & then the real pain kicks in , its either painkillers/physio to de-inflame to get hypermobile again, till the nest flare up & so the circle continues.:o
Glad to see your dd is getting some help, the foot thingys do help!

ash4becks

shays_mum wrote: »

Hi Trialia,
Didn't know there was one at Guys??!, is this connected to UCH?, thanks!

it's UCL hun here the link for all the clincs known about

http://www.hypermobility.org/clinics.php