hypermoblity syndrom and the q.e in gateshead or london

ash4becks

i was wondering if anyone had seen the doctor that runs this clinc and the expernice they had in helping them,

it was the musklularskletal consultant that dignosed me and seemed to say yes to the hsm for defo but thinks there might be more to this aswell

iam a bit unsure about seeing this doc already i really wanted to be sent to london for to see what can be done and if there are other further factors affecting my health which i really wouldnt be suprised if there was i no my luck , the doc down there has a exellent reputation and speicalises in this field , can this be changed if i have asked for this, the q.e clinic is very new from what i have been told on the hms website

mummyslittleboy

My son has been seen by Professor Grahame at University college hospital London but was referred back to his paeditrican for the time being he will go back again when he is older. But both myself and my daughter are seen by our Rheumatologist locally. I do know that you can have a private appointment to go to London.
Who has referred you to the q e clinic?

ash4becks

mummyslittleboy wrote: »

My son has been seen by Professor Grahame at University college hospital London but was referred back to his paeditrican for the time being he will go back again when he is older. But both myself and my daughter are seen by our Rheumatologist locally. I do know that you can have a private appointment to go to London.
Who has referred you to the q e clinic?

the muskleskeletal doctor i sore in 2008 was just for bad knees of a accedent then springs that on me, nothing was done about it then due to my doctors messing up few days ago its now it feels in every joint in my bottom of my back but for my elbows
still recovering of flair up now hitting the 3 or 4 week point and iam fed up

and i said about wanting to go to london really and defo when he said about theres a chance theres something more to it but can this be done under the right to see who you want, but really is the local rematoligy knowledgable enough about hms and can i ask what help do you get with condtion

i no about seeing him private not sure on the cost thou would just use my dla thought x

mummyslittleboy

Hi

My son has HMS,hypotonia and global developmet delay he see's a physio regularly and he sees his paeditrican, he has to wear piedro boots as his ankles are so unstable at the moment he cannot speak and no one knows why so he sees speech and language and we have learnt makaton to help him communicate he gets tired easily and often has naps from little activity.
My daughter and I have Ehler danlos syndrome my daughter has hydrotherapy and physio, she is under cardiologist for suspected mitral valve prolapse and she see's her paeditrican and Rheumatologist and is on pain meds. I am on lots of pain medication am still waiting to see physio after my dr read my rheumy report wrong and thought they were referring me then when I ask for report 6 months later realises he was supposed to refer me!I also have scoliosis so my back is just constant agony, SO other than meds I dont get any help.

I have found my local rheumy very good but you do have the right to ask for a referral to London if that is what you would prefer I suppose it depends how much you feel you trust your Rheumy and how comfortable you feel that you are getting the right treatment from them. What have they said they will do to help you?

ash4becks

mummyslittleboy wrote: »

Hi

My son has HMS,hypotonia and global developmet delay he see's a physio regularly and he sees his paeditrican, he has to wear piedro boots as his ankles are so unstable at the moment he cannot speak and no one knows why so he sees speech and language and we have learnt makaton to help him communicate he gets tired easily and often has naps from little activity.
My daughter and I have Ehler danlos syndrome my daughter has hydrotherapy and physio, she is under cardiologist for suspected mitral valve prolapse and she see's her paeditrican and Rheumatologist and is on pain meds. I am on lots of pain medication am still waiting to see physio after my dr read my rheumy report wrong and thought they were referring me then when I ask for report 6 months later realises he was supposed to refer me!I also have scoliosis so my back is just constant agony, SO other than meds I dont get any help.

I have found my local rheumy very good but you do have the right to ask for a referral to London if that is what you would prefer I suppose it depends how much you feel you trust your Rheumy and how comfortable you feel that you are getting the right treatment from them. What have they said they will do to help you?

i havent ever seen a rhemy why i was asking about it , its the eds iam wondering about for me the rasing heart, i had a options appintment and had noticed that my musles in my eyes werent great nothing really happened thou,

muslkal cons said about insoles and thats it

ash4becks

mega bump still need to decide what to do x