I was going to publish the next part of my Spanish adventure but seeing as I had my appointment in London a few days ago I thought I’d fill you in on that first.
I’m currently very poorly. I seem to be suffering more each day after my trip to London. So if this post is a little incoherent that’ll be why. The rate at which I am typing is laughable!
Navigating London was not going to be easy, we knew. Even when well it was the last place I would choose to go. We decided against getting the train in the end. The noise, movement, and hustle and bustle of other passengers was the last thing I’d have needed. Particularly after such a long, gruelling appointment.
In the end we drove to Outer London the day before and stayed in a Premier Inn just 10 miles away from the hospital. We took a taxi to the hospital, leaving plenty of time to make the appointment. Those 10 miles took 1 hour in the London traffic.
When asking for other people’s experiences of The National Hospital of Neurology and Neuroscience not one fellow M.E sufferer came back to me with news of a positive experience. Each one had been treated badly and received hurtful comments about this illness.
I feel it’s important to share how my experience was not at all a negative one. Each member of staff was polite, caring and professional. My consultation was 45 minutes long; the longest appointment I have had in 5 years. It was incredibly thorough. I was treated with a respect that now feels unusual after 5 years of being left to navigate chronic illness alone and without professional help.
I was seen by the Muscle Channel Clinic. My GP had referred me to have one of my symptoms investigated further. I have bouts of paralysis where I cannot move or speak. The only warning sign I get is that my temperature will either rocket or plummet just before an attack. The consultant was trying to see if I have indeed got Periodic Paralysis, even though sufferers of that are still able to speak during their attacks.
After my consultation, where I had to perform some basic routine strength tests by pushing each arm and leg against the Doctor and suchlike, I had an EMG test (Electromyography) and a Nerve Conduction test ahead of me.
The Nerve test was long. Very long. In all I was in the test room for 2 hours. I was hooked up to a machine that, at first, sent an electric shock to first my right hand, then my right leg, every 10 seconds for about 7 minutes. Next it sent the shocks to just my right hand, one shock a minute for 50 whole minutes. My left hand was then put in ice for 15 minutes which was painful. Very painful. Shocks were then sent to that hand in the same way for 20 minutes. At first the shocks were okay and although they were always bearable my poor, broken body had had enough by the end of them.
The EMG was shorter but more painful and unpleasant. Acupuncture needles were placed into different muscles along my arms and legs and hand and then wiggled about a bit. I had to relax and tense my muscles. If you google the tests you’ll find out more.
I was sent for blood tests and a gene test. I am awaiting the results of those, but the initial appointment suggests that I am yet again somewhat of a medical mystery and that it could just be M.E. wreaking havoc.
So I’m a little out of sorts, but my spirits are still high. We giggled when we got home and I had to get from the car to the house! My poor right leg had completely given up and I could only drag it along as I was practically carried into the house, my right foot needing to be nudged ahead of me by Mr Tree Surgeon and he supported my weight.
What with the travelling and the nerves of facing new medical professionals and not knowing what was ahead of me, not to mention the electric shocks it seems it’ll be a while before I’m back on my feet. Literally.
So bear with me for a while. I haven’t been able to even reply to text messages properly yet.
M.E. myself and I 