The importance of finding the RIGHT doctor for you

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!

Untouchable

For years I suffered under the diagnosis of ME.  I was 15 years old when I was diagnosed, there were no treatments and I was expected to get better.  I didn't get better.

Over the years I suffered flare ups of pain an ill health.  I saw many doctors who were unable to help me.  No-one knew what ME was or how to treat it.  I'd tried low dose antidepressants but they just made my symptoms worse.  I saw psychologist but I had no depression or behavioural problems that would explain my symptoms.  There was nothing I could do but I didn't give up

After years of research I discovered my symptoms fitted Joint Hypermobility Syndrome, Ehlers Danlos Syndrome and POTS and after more years ofbatting with doctors who were reulctant to consider anything other than my ME diagnosis I finally got diagnosed with JHS, EDS and POTS.

Finally I had the right diagnosis I had hope that there would be treatments to help me.  I was wrong. Suddenly I had become untouchable.  My conditions were so rare that I knew more about them than the doctors I was consulting, they were not aware of some of the most basic symptoms and complications so they backed away like I had something horribly contagious.

I saw a local physio who barely even examined me.  She told me to stretch and do basic fitness exercises.  She encouraged me to do Tai Chi, which wasn't the best advice to give someone with POTS considering I can't stand unaided, I collapse when I do stand and raising my arms above my head makes the symptoms ten times worse!  I was discharged because there was nothing they could do for me.  Nada.  Zilch.

I was told to try Pilates and paid for private lessons but they caused me more pain and I was able to do less as a result of the increase in symptoms.  One worrying symptom was the severe pain in my head and neck that is brought on by any kind of movement or stress.

I saw a neurologist to rule out Chiari malformation as it may have explained some of my symptoms and it is more common in people with EDS. The doctor was doubtful that I had it and explained even if I had they wouldn't do anything about it as the surgery to treat it could make me worse.  I was given a laying down MRI to rule it out (even though an upright MRI is required to fully discount it) and was told everything was normal.  I was discharged, no closer to finding out what was causing my pain.  I did learn that I have myotonia in my hands.  If I grip something very hard for more than a few seconds I can't relax my fingers.  The neurologist said it was a rare complication of EDS but gave no other information or advice on how to treat it.

I've had the pain in my head and neck for 14 months now.  It affects me every single day and the only thing that helps is diazepam, which is not an ideal long term solution to the problem.  The pain gets worse when I move my head, raise my arms to lift a plate from the cupboard, turn to look over my shoulder when crossing the road, even sleeping can trigger it.  I went back to my GP and she wondered if it could be occipital neuralgia. She sent me to a pain clinic with a view to having injections to ease the pain.

I waited a month for the clinic appointment but unfortunately it was another disappointment.  I was discharged in less than 30 minutes.  Apparently my pain is not consistent with neuralgia and the treatments are not suitable for me.  I was offered injections of steroids and a local anaesthetic - my old friend lidocaine.  I had to explain to the doctor that lidocaine doesn't work in EDS patients.  The doctor had never heard about it before so I showed him my Stickman Communications card  He said he wouldn't inject me, especially considering the reaction I had to lidocaine when the ignorant ENT sprayed it up my nose.

The other option was acupunture.  I've had it before and it can be quite relaxing so I said yes and asked if he had any gold needles.  I have a nickel allergy and the last time I had acupuncture I broke out in itchy red dots where the needles had been.  He said no, he only had the stainless steel needles which contained nickel.  There was nothing else he could do for me so I was discharged.  The doctor was apologetic but seemed pleased to see the back of me.  I have become too difficult.  Untouchable.

I have the right diagnosis but I can't find anyone who even wants to help me, never mind is actually capable and knowledgable enough to help me.  I've exhausted NHS options so that leaves me with having to do my own research and pay for my own private treatments.

C'est la vie!