This is the first time I have started a discussion thread on here so forgive me if this is intrusive or in the wrong format.
I have been taking part in to some studies in to pain with eminent pain specialist Dr Dave Bennett and his team of neurologists at Kings College and Oxford hospitals, and they are looking for more volunteers to help out with this research.
I have attached a flyer with more information and summarised the details below but I am more than happy to respond to any questions you have if I can as I am sure you will agree, the more research we can support then hopefully one day there will be a cure!
PainfulChannelopathiesStudy
You can take part if you, or a member of your family been diagnosed with an inherited disorder of pain sensation such as:
•Paroxysmal Extreme Pain Disorder,
•Primary Erythromelalgia,
•Congenital Hyposensitivity to Pain
•And are over 16
I have attached a flyer which gives more detail about the study and what is involved, but essentially
• Functional Magnetic Resonance Imaging (fMRI) to observe what happens in your brain when we control how your body your responds pain.
Hi Jane I’d be interested in volunteering, it’s 5.45 am and not a moments sleep have I had ! 2nd night on the trot, normally manage to get between 3 - 4 hours, I was diagnosed in 2008 shortly after my 1st hip replacement , I have R A as well, had my 2nd hip replaced in June last year and have not been able to return to work since! I can’t remember the last time I had a night without a flare up, also my breathing seems to be getting worse, up until I started getting problems I was a keen squash player, worked out, nearly every night , and was generally quiet fit, although there are lots of autoimmune related illnesses in my immediate family , I had not had any symptoms of any at all…so if I sound like the kind of volunteer you require , please let me know? Many thanks
Oh, how I wish they would do that here in the U.S.. I check TEA's site regularly, and never find active studies. I do hope there is some breakthrough soon.
Hi Susan, so pleased you'd like to get involved, please contact the neurologists directly and they will be able to give you more information. Tel: 02078486184 - Mobile: 07902114851 Email: ■■■■■■■■■■■■■■■■■■■■■■■■■■■
Hi Susan, so pleased you’d like to get involved, please contact the neurologists directly and they will be able to give you more information. Tel: 02078486184 - Mobile: 07902114851 Email: juan.ramirez_rozo@kcl.ac.uk
I wish they'd do more research into secondary. I saw Dr Bennett in London in the summer but because I don't have primary he said I would just be treated by the pain clinic. So frustrating.!