I had some tests at the hospital last week and it was quite a surreal experience.
I arrived for my 6.30pm appointment and the hospital out patients was closing down for the evening and spookily quiet.
I waited for no time at all as I checked in, was told immediately what desk to go to, and as I arrived at the desk there was a nurse waiting for me to go straight into the consultation room. How often does that happen?
The Dr was in soon afterwards and I had to lie on the bed on my side. Not my most comfortable position, but he needed to get to my back. From my position the only thing I could see was the wall so my other half has told me what happened next. I didn't feel anything.
I had two needles put into the muscles either side of my spine. These were to measure the electrical activity in my muscles. I was then asked to move my head back and forth as the activity was recorded on a noisy machine. This procedure is called Electromyography. I can only speak from experience in saying I felt nothing, I do still have a lot of numbness in the areas tested so it may be more uncomfortable for others.
The next part of the test was a Nerve Conductive Study. This measures nerve and muscle function and is used in the diagnosis of a lot of spinal conditions. During this test I had little pads attached to various parts of my body and I was 'electrically stimulated.' On my legs I felt nothing but my legs did move. By this time I was getting really uncomfortable so I was happy to be able to go onto my back. The pads were then added to my arm and I found out that electrical stimulation was actually little electric shocks! It hurt a little but I was more fascinated by the way they were making my fingers move with their shocks and the pain was soon forgotten. I can imagine this kind of test being quite stressful for someone with normal sensitivity.
I now have to wait a few weeks for the results.
I know my Consultant is testing to see how my nerves are reacting and if he can pin point any damage. He is also testing for Stiff Person Syndrome, but I'm pretty sure I don't have it.
I'm still getting used to my new medication but I'm not sure if they are making me worse instead of better still. I'm now approaching my fifth week of taking them and I thought my body would be getting used to them by now, especially as I have to increase the dose next week. I've been a lot more tired which is bad enough, but I've also been more unsteady when I do walk, I've walked a lot less and I'm getting more pain.
I'm also waking more in the night, even though I take strong painkillers to help me sleep better. I woke the other night in so much pain I got scared for a while. In my sleep state I'd forgotten that my body was damaged and the pain I often get just surprised me by waking me up.
Then last night I'd only been in bed for an hour when I woke up because it felt like someone was shaking me. It took a few seconds to realise it was my body shaking and I couldn't stop it. I managed to turn over to reach my mobile and I quickly sent a text to my partner. It just said, can you come please. He came straight away but by the time he had reached me the shaking had stopped but I still felt very weird and quite nauseous. He felt the muscles in my legs twinging and I realised that all I had experienced was muscles spasms. I vaguely remember having them when I was back in hospital over nine months ago. They've not been so bad since, until last night.
I get a lot of muscle spasms but they are usually the stiff type, you can't tell so much in my legs when I'm having a spasm but you can in my feet. I may even feel brave enough to record it one day. My feet go stiff and my toes separate. Sometimes my feet turn inwards, or outwards (They are not fussy) and during a spasm I cannot move or control them at all. The pain is pretty bad while it's happening, but I have got used to it. This can happen ten or more times a day.
My legs stiffen too but I don't get the twitching type of spasm very often. I get them more when I'm in my wheelchair because my body is in a more 'confined' position. Or late at night when I am tired. They don't last as long as the stiff spasms. I've not had a continuing spasm of such extreme since the very early days of my condition.
So, is it my medication making me worse or is it my condition getting worse?
I don't know so I guess I'll have to speak to a Doctor. I'm going to wait until I get the results of my tests and see if they have any answers first. I know my GP will not have a clue and getting an appointment at the hospital is not so easy.
In the meantime I'm determined not to get any worse, especially before my big day next month.