A little positive thinking can go a long way.
I'm pleased to report my appointment in London was a success. The journey wasn't too bad, we made it to the hospital on time and I got to see Dr Mittal who was very nice. We went over the basics, she had a look at me, agreed with my JHS/EDS diagnosis and she asked me if I wanted to go to rehab. I said yes!
There is a three week inpatient rehabilitation course at the Royal National Orthopaedic Hospital at Stanmore and I've heard great things about it. They deal with every aspect of the condition and basically teach you the skills to cope with it. Dr Mittal thought it would be a good idea, as did Dr Sobey at the EDS Service and Dr Hakim at St John and St Elizabeth's so I said I'd like to go please.
I will have to wait (yes more waiting!) 6-8 weeks for an assessment and then it is is likely to be another six months before I can actually go on the course, but it will be worth the wait :)
During the consultation Dr Mittal kept asking me the same question. "If you've had these symptoms since you were a teenager, why were you only diagnosed last year?"
It's a very good question and there is only one reason I can think of. For over twenty years I have been discriminated against because of my diagnosis of ME (Myalgic Encephalomyelitis). When I was 15 I was diagnosed with ME and the doctor said it wasn't the worst case he'd seen but that's what I probably had. Since then every doctor has accepted it as my diagnosis and never had the inclination to question or challenge it. Every new symptoms was blamed on ME and because the illness is poorly understood, often presumed to be psychological and there are no treatments for it, I was always sent on my way without help. It was only because of my own personal research that I actually got the right diagnosis.
It was obvious to Dr Mittal what was wrong with me because she has been taught all about it. Her knowledge is current and she is experienced with JHS patients. My GP on the other hand didn't know anything about it. My last rheumatologist called it BENIGN Joint Hypermobility (meaning it doesn't kill rather than it does no harm) and he told me the treatment was the same as for Fibroymyalgia, which is completely wrong! It makes me wonder how many other people are misdiagnosed with ME or Fibromyalgia who actually have JHS?
Dr Mittal didn't want to change my medication and she couldn't give me any answers as to what else is wrong with me but she did diagnose me with carpal tunnel. I was given some wrist splints to wear at night and is writing to my GP to ask her to refer me for nerve conduction tests. The thing is, and I know I'll sound very arrogant for saying this, but I think Dr Mittal is wrong.
I've been having numbness in my ring finger and little finger on both hands for about a year now. I have mentioned it several times to my GP but she just dismissed it saying "Oh, I get that!" and refused to discuss it further. I wondered if I had carpal tunnel so I looked it up on the internet. It does cause numbness and tingling but affects the thumb, index and middle fingers, NOT the little finger and ring finger.
In carpal tunnel the median nerve is compressed at the wrist, but there is another nerve that goes to the ring and little finger, the ulnar nerve. If this nerve is compressed at the elbow then it causes cubital tunnel and all the symptoms I get.
If I sleep with my arms above my head or tucked under my pillow I wake up with dead hands, when I talk on the telephone for more than a few minutes my fingers and hand go number, when I spend too long holding a computer mouse my fingers go dead and when the symptoms are bad I tend to drop things because my grip is reduced and I can't hold them tight enough.
Now, I'm not a doctor, but it seems simple enough to me. It's entirely possible I have carpal tunnel as well but I think cubital tunnel is a better fit for my symptoms. I'm not sure how I'm going to get that one past my GP. I'm not exactly her favourite person after I made a complaint about the total lack of care and misdiagnosis.
I don't want to have to go through testing for carpal tunnel if I don't have it because it will delay treatment for what I think I do have, but it's difficult trying to put forward an alternative diagnosis when you're not a medical professional. When you start a sentence with "I read on the internet that..." you're guaranteed get eye rolling and a dismissive attitude because everything on the internet is rubbish and written by crazy people, right?
Anyway, I'm pleased about how the appointment went. I didn't get everything I wanted but at least I'm on the waiting list for Stanmore now, which is a massive step in the right direction.