Yesterday I spent seven hours in the car travelling to and from the Royal National Orthopaedic Hospital in Stanmore. 14 months after being referred to see Dr Cohen I finally got the opportunity to meet her, and I'm very glad I did.
I was a little apprehensive, especially considering my last appointment with her colleague, Dr Mittal (see A pointless trip to RNOH Bolsover Street) but this trip was definitely worthwhile!
Dr Cohen was awesome. She's down to earth, approachable, very experienced in her field and keen to help. I came prepared with six pages of notes and copies of various letters and blood tests that I've had done locally. She patiently listened to all of my concerns and offered constructive suggestions, helpful advice and a plan of action.
Dr Cohen agreed that an intensive rehab programme is not suitable for me at the moment. I need to address some more immediate issues such as the pain in my head and neck. She recommended that I see a community physio at home for an assessment and to learn some exercises that might help me. She also recommended getting a Theracane, which in her words looks like a martial arts weapon!
We talked about my muscles and she said they are irritable and excitable. I showed her the myotonia in my hands and she though the neurologist used the term to describe what was happening, rather than to diagnose a myotonic disorder but she agreed that it's worth seeing Prof Hanna's team at the channelopathy clinic just to put a line under it.
She gave me advice on sitting in good posture, it's hurting my sit bones so she suggested using a seat with more padding so I'm thinking about recovering my computer chair and padding it out with a little memory foam.
We discussed all my stomach and bowel problems and she's going to ask my GP to refer me to an EDS savvy gastroenterologist. She also wants me to be assessed by an OT for compression gloves. We discussed pain medication and she suggested a few options from low dose pregabalin, low dose pain patches and duloxetine. It's all about balancing the benefit and the side effects. I'm not keen on pregabalin and duloxetine as I've read too many horror stories about withdrawal and I've had bad experiences with gabapentin and prozac so I might give those a miss.
We talked about me using elastic ankle supports when I sprain my ankle, getting Dr Marten boots for ankle support when walking (not that I do much of that), finding a relaxation technique that works for me, FODMAP diets and loads of other things.
It was a really positive appointment. Dr Cohen is going to write everything up in a letter to my GP and she'll send me a copy to as my GP surgery is very good at losing important letters.
I'm very grateful to Dr Sobey at the EDS Service in Sheffield for recommending Dr Cohen. I only wish I'd seen her first instead of Dr Mittal because I might have avoided the physical and mental stress of pushing myself through rehab. I was so upset when it didn't work, I blamed myself even though I gave it 100%, and I was and even more upset when Dr Mittal refused to help me because "the only treatment is rehab". I'm glad that Dr Cohen gave me other options to consider.
I've seen a lot of doctors in the past 24 years and only now am I learning the importance of finding the right ones. One good doctor is better than 20 bad ones and even though I am suffering today after the 300 mile round trip to Stanmore it was worth it.
Thank you Dr Cohen!