It's been a tough couple of weeks, again :(
I have been experiencing lots of pain. I spent a few nights waking up at 4am in agony. My hands were just so painful. It's been really difficult because of the cold, but even though it has warmed up a bit, the pain hasn't subsided at all.
I have also had pain in my feet, up my legs and in my lower back. It is driving me crazy.
My feet hurt a lot. It is a strange sensation, like sand or grit is rubbed all over the bottom of my feet. As you can imagine, it makes walking rather uncomfortable. But I have to switch off from it, otherwise I wouldn't walk anywhere!
And the pain that goes up my legs feels as though the nerve endings are going haywire. It is similar to the sensation I have had all over my body, so I guess I should feel lucky that it is just in my legs eh?!
The pain I get in my lower back, is a burning pain. It sometimes feels as though someone has got a handful of pins and is stabbing them into my back.
As you can imagine, put all these feelings together and it is not a pleasant experience at all.
You learn to live with it to some degree, otherwise it would just dictate everything. But at the moment, I am really struggling with it.
When I had my last Tysabri infusion, I spoke to the MS nurse about it. But because I have had a referral to the pain clinic, they are going to wait and see what the outcome of that appointment is.
That is all very well and I appreciate that they have pretty much run out of ideas, but it doesn't help me at this point in time. The appointment is on February 17th, three weeks away!
I rang the nurse again today, because even though I know they can't help, I felt they still needed to know that I am having a hard time with this. Unfortunately neither of the nurses were there. I was advised that it might be worth contacting my GP, so I am going to try and make an appointment tomorrow. I'm not sure that it will do any good, but I need to talk to someone about it.
I am a little concerned, that could this be a relapse?
The definition of a relapse is the onset of new symptoms or the exacerbation of existing symptoms, for a period of more than 24/48 hours. I have my pain symptoms on a daily basis, but there are periods where it is a lot worse than other times. This is one of those times and it has been about three weeks since it started getting worse, so does that make it a relapse??
I've had MS for over seven years, you'd think I'd know by now if I'm having a relapse. The problem is, that I have had relapses in the past where my legs have lost mobility or the right side of my body has gone numb. It's not like that this time, but that doesn't mean it's not a relapse, does it?
Another thing that happened today, is that I had an ultrasound on my bladder and kidneys. It was partly to check whether I am emptying my bladder properly or not. They are sending the results to my GP, which will take about a week, but I was told that I hadn't emptied my bladder fully. I'm not entirely sure what this will mean for me, but I guess I will find out in about a week.
Some good news! We will be picking up our new car on Friday morning! I can't believe that it has been delayed for so long, but it doesn't really matter! It just means that we have had the PT cruiser for about ten days longer than we should have done and I'm not really sorry about that, as I will be sorry to see it go on Friday! I am really looking forward to getting the new car though. It is always exciting, partly because I can't believe that we get a new car every three years. This is our third car on the Motability scheme and I still find it laughable that they let me have a new one!! It is a great scheme though and I wouldn't still be driving, if it wasn't for the scheme, so I have the greatest respect for it.
Nissan Note, here we come!!
And finally, a concert update. We have only had three rehearsals so far, but only one full rehearsal, where we were all there. We have another one on Saturday afternoon, which I am looking forward to! We have gone through the first group number and we have allocated all the solos & duets etc. On Saturday we will go over the numbers we did before and then start on the song that ends Act one. It is a fabulous number, which is actually two numbers put together. It is quite complicated, so we will need time for everyone to learn it. But it will sound amazing!!
Take care everyone!
XxXxX
Hi Amelia,
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Herrad
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Ooh - I sympathise with the bladder problems. That is my new and latest symptom. And boy, is it irritating. I mentioned it ot my MS nurse last time I saw her - and she told me about the scan thing - but as it had only just started we decided to wait and see if it was an infection. She told me that there is medication that you can take to help...
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