I'm waiting for MRI results and expecting a diagnosis of MS. I've had TM since 2006 and had two confirmed attacks, the second in 2009. I had a lesion at C4 in 2009 but brain scans have always been clear, as was a LP in 2007. I was told by my neuro in 2009 that I may go on to develop MS but he retracted this in 2012 as I had no other new symptoms. However, I've also had other things such as mouth spams in 2011, which have all but gone, for which no investigation was done. I'm on Gabapentin 1200mg/day, Amitriptyline 50mg/day and Baclofen 30mg/day all for residual neuropathic pain etc from TM. I'm 49 years old.
At the end of Sept this year I had muscle pain around my bra line. I thought I'd pulled a muscle but this went on, and after every a couple of weeks I began to suspect it was banding. All my TM symptoms have come on gradually, building over days and weeks. I eventually contacted my neuro (I have a new one as my old one retired) and he suggested steroids if things didn't improve. I eventually started them on the 16th Oct for five days.
Things slowly improved once I finished the course and I had some time off work during the course and after. Fatigue has been the main problem since then but I was feeling a whole lot better.
Then around the 24th Nov I began to notice banding again, lower than before, in the region above my belly button and the bottom of my ribs. This has got progressively worse and I am waking at 4.30am each morning by the tight spasms. I take 10mg Baclofen when I wake - part of my usual morning dose, and today it was so bad I took 200mg Gabapentin too. This helped and eventually I got back to sleep, around 8am. Which is when I should be at work.
I don't have any other major symptoms but the meds I'm on will probably mask a lot. I do have a patch on my shin which is painful in an altered sensation way which I noticed with the first lot of banding and which has returned. I'm also experiencing heaviness in my arms and legs again. So, I know a lot about TM which I was managing fine until the end of Sept, and a little about MS - I'm learning fast. My neuro believes I have MS but wants the MRIs to confirm it. I have emailed him for advice about this second attack but not heard back from him yet. As I haven't had a formal diagnosis I only have him and my GP to go to, and my GP is naturally a little hesitant whilst waiting for the diagnosis.
Hence my post here; the TM forum was brilliant for help and support and reading here I can see this is the same. But everyone's experience is different and I want to be sure I am drawing the right conclusions.
So my questions are:
Does it sound like I'm having a second relapse as the banding is in a place not previously affected?
How do I best manage this as I don't want a second dose of steroids so soon.
Do other people get woken like this - is this a 'normal' occurrence? Why does get it so bad when I'm asleep? It's manageable through the day, at times I can't feel it at all. Is this just because I am moving around and also distracted by day to day life and work?
Lots of questions, sorry, but if anyone has any advice etc I would appreciate it!
Many thanks,
Heather
