tag:blogger.com,1999:blog-34940564.post577644845394156461..comments2023-11-25T01:12:34.326+00:00Comments on Benefit Scrounging Scum: Publicly PrivateBenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-34940564.post-33557726815464750032011-02-14T11:02:15.296+00:002011-02-14T11:02:15.296+00:00Hi, I don't know if you know about this alread...Hi, I don't know if you know about this already but Bart's are currently running a research study into gastro problems associated with hypermobility. The contact for this study is Dr Asma Fikree (clinical research fellow) email: a.fikree@qmul.ac.uk telephone: 020 78822647.Another EDSernoreply@blogger.comtag:blogger.com,1999:blog-34940564.post-88321887033261476342011-02-10T22:16:17.643+00:002011-02-10T22:16:17.643+00:00As ever you've captured something really impor...As ever you've captured something really important about having a wonky condition like EDS. I'm actually seeing Barts Professor on 3 March for the first time - very excited. Is there anything I could do during the appointment to help with your stuff? Also - can you ask to be referred to him? My referral will only have taken eight weeks from initial request to appointment. As travel is difficult, maybe he could even do a phone consultation?? Anyway, if you'd like me to ask him anything just let me know.misspiggyhttp://hpinnock@yahoo.co.uknoreply@blogger.comtag:blogger.com,1999:blog-34940564.post-31847235617495840992011-02-10T08:52:50.078+00:002011-02-10T08:52:50.078+00:00*Facepalm*
Honestly, I'm rather appalled that...*Facepalm*<br /><br />Honestly, I'm rather appalled that "heartsink patient" is something people even teach GPs about. Is there actually a "leave all empathy at the door if you're going to be a doctor" course? What is a GP FOR if not to diagnose and attempt to find a way to treat someone's underlying conditions (yes, I know, they have to try to do that in ten minutes or less).<br /><br />I honestly think the paragraph about the issues with our own instincts should also be required reading for GPs and specialists as this is very true. I keep getting told to "just learn to cope" - thing is I've been coping for years, as have other people. I have had symptoms for so longer I don't even remember to report them. I've forgotten I have them. I have to be reminded that no, not everyone's feet turn blue if the temperature drops below 18 degrees. No, having migraines twice a week isn't normal. Nor is having hair which hasn't grown in over 14 years. But I've gotten so used to getting the brushoff that I don't report it anymore. I've tried to be more assertive about these symptoms but then they accuse me of grasping at straws. Not really sure which way to go, really.<br /><br />The trust is really important, and in many of these relationships the trust just isn't there.Oya's Daughterhttps://www.blogger.com/profile/01184649716540468970noreply@blogger.comtag:blogger.com,1999:blog-34940564.post-27008174162049425822011-02-10T02:53:42.422+00:002011-02-10T02:53:42.422+00:00too* Ugh. Typo.too* Ugh. Typo.Veronica Foalehttps://www.blogger.com/profile/05519401661788911341noreply@blogger.comtag:blogger.com,1999:blog-34940564.post-2267147019519105202011-02-10T02:51:32.055+00:002011-02-10T02:51:32.055+00:00And this kind of story is way to common, isn't...And this kind of story is way to common, isn't it? Sigh. <br /><br />(((hugs))) honey.Veronica Foalehttps://www.blogger.com/profile/05519401661788911341noreply@blogger.comtag:blogger.com,1999:blog-34940564.post-11139021957502516252011-02-09T15:11:38.448+00:002011-02-09T15:11:38.448+00:00*gentle hugs* I am sorry that this is all such a m...*gentle hugs* I am sorry that this is all such a mess.stopbeingstupidhttps://www.blogger.com/profile/14860866633957025571noreply@blogger.comtag:blogger.com,1999:blog-34940564.post-44011697414672410882011-02-09T14:55:07.082+00:002011-02-09T14:55:07.082+00:00I am sorry you are having such an horrendous time ...I am sorry you are having such an horrendous time trying to get good medical care. I also wanted to say that dermatitis herpetiformis can occur in many places, not just the legs - see for example http://www.patient.co.uk/doctor/Dermatitis-Herpetiformis.htm. Mine was bilaterally on my hips and cleared up completely on a gluten free diet.<br /><br />With best wishesBird of Paradisenoreply@blogger.comtag:blogger.com,1999:blog-34940564.post-26719742398738914732011-02-09T13:02:05.208+00:002011-02-09T13:02:05.208+00:00So sorry you had to go through this experience and...So sorry you had to go through this experience and pay for it to boot! I'm at a loss to know what to say, I'm sitting here wishing my cyber hug could reach you! I had a similar experience myself this morning, it's so difficult when you build up trust and rapport with a medical professional and then they move on. <br />Romi xxxRomihttps://www.blogger.com/profile/08692872510628054433noreply@blogger.com