Tuesday 10 March 2009

and it's all in my head....

I went to see my neurologist yesterday afternoon. I last saw him about two years ago, shortly before we went to Ecuador. At that time, he sent me for another MRI scan, and when that scan showed no new lesions on my spinal cord, we reached something of an impasse: I was frustrated that I seemed to be stuck in limbo with no news or progress on my condition, but the neurologist was waiting for me to cross the arbitrarily drawn diagnostic line that would take me from Transverse Myelitis and into Multiple Sclerosis - a condition that he is currently researching and running various clinical trials. I was certainly in no hurry to be diagnosed with an as-yet incurable condition, but not knowing what was wrong with me or how it might progress was extremely frustratating. The idea that I might have to sit around waiting for a relapse that might never come was not terribly appealing to me, particularly when I was already suffering the widespread symptoms of the lesion on my cervical spinal cord.

Life goes on, of course, so over the two years since that last visit, I've tried to put the worry of what might happen out of my head, and to concentrate on making the best of what I still have. I have numbness from the top of my head to the soles of my feet, I have some muscle weakness and I have pins & needles in hands and feet. That's not great, but I can still run, swim, cycle, play football and all the rest of the things that I used to do. Perhaps I can't do them to the level that I used to before the lesion arrived in 2005, but then, I'm also nearly 4 years older than I was then, so perhaps that's only to be expected?

As I mentioned the other week, my symptoms seem to have worsened over the last twelve months, culminating in that morning when I fell over because my right leg wasn't working properly. Although I wasn't sure if this counted as the new symptoms that my neurologist was looking for, I did think it was probably worth checking in with him again... after all, a lot can happen in two years (and, if you're so inclined, you can track my progress by reading all my other posts on this subject here).

To be perfectly honest, I wasn't expecting very much more from the consultation than a referral for another MRI scan to see if there was anything new going on inside my central nervous system. I did get another referral to have more scans, but I also got a lot more than I was expecting. After the usual, fairly cursory seeming examination, my neurologist told me that more scans were needed, but that whatever the results of those scans - whether or not they revealed any additional lesions in my brain or my spinal cord - he thought that things had moved on and that treatment was now appropriate. You might remember that my diagnosis since 2005 has been Transverse Myelitis: a single lesion (or sclerosis) on my neck. By definition, in order to be diagnosed with Multiple Sclerosis, then at least one other lesion was going to need to be identified. That's what I thought, anyway. Apparently my symptoms have advanced enough that the diagnosis of TM can be questioned. My symptoms could all still be explained by a single lesion, but in my neurologist's opinion, they are more likely to be explained by something else and that I am likely to be in danger of having further relapses that may worsen my condition - indeed, my neurologist thinks that the incident with my leg may have been just such a relapse.

So, whatever the outcome of my scan, it looks like I'm going to be put onto some treatment to help stave off the risk of relapses (and the available treatments are thought to reduce the frequency of attacks by some 30-50%, with a greater chance of success the earlier they are started). This is quite a big deal for several reasons - not least the fact that these treatments are self-administered injections, either daily or weekly. Learning how to do this is one thing, but then actually doing it every day or ever week for the forseeable future is quite a thought. The second thing is that, in order to qualify for the treatment, I would need to be formally diagnosed with Multiple Sclerosis. Yes, subject to the results of the next scan, I may only have one demonstrable lesion, but it turns out that there is something called Clinically Isolated Syndrome (CIS) and apparently although my MS might not be a clearcut case, it effectively is still MS, and if I start treatment, then I will be officially diagnosed with Multiple Sclerosis.

So there it is: the label.

I had a label before, but it was a label that didn't really mean anything to most people. This new label is different though: it has baggage; people have heard of it and they have pre-conceptions about it. Having this new label may mean that people look at me differently and will make assumptions about me and about my future. Some of those assumptions may turn out to be true, but one thing that isn't changing is that I still don't know what's going to happen to me and how this thing is going to develop.

So I'm going to have some more scans, and whether or not the scans make me a clinically clear-cut case or not, I'm going to be going to an MS clinic, I'm going to see an MS nurse and I'm going to learn how to inject myself with something to try and slow the development of my condition down. My neurologist also sounded me out about participating in some clinical trials - MS is one of those 'lucky' conditions that attracts quite a lot of funding and has several promising treatments in the pipeline. I'm not sure about that, but after months... years... of limbo, it's nice to be finally presented with some options.

I don't know what I think really. I can hardly say that the diagnosis was a surprise, and it's always been on the cards really.... but it's one thing to know it's a possibility and quite another to sit in front of a neurologist telling you that it's what he thinks you've got and that you ought to start discussing your treatment options. I think that perhaps this is going to take a little time to sink in.


  1. Shit. That puts some of the stuff I'm worried about at the moment into perspective. I hope the test results are as good as they possibly can be.

  2. Never sure what to say when I hear news like this. You seem positive though and that's important, your attitude will make a huge difference to how you adjust (if you need to at all).

    And, of course, keep blogging about it, or at least talking about it, it will be cathartic I'm certain.

  3. Awh, Swiss, I can only begin to imagine how this is taking some time to sink in: but on the positive side, the (probable) diagnosis does allow more interventions to take place that should at least minimise the extent of the impact in the shorter term.

    Hope you at least had a good birthday: look after yourself

  4. I hope I am positive - starting to inject myself will be a big deal, but at least it's progress of a sort and it means I'll be doing *something*.

    The label I have for my condition is changing, but effectively this is the same thing I've had since I woke up one morning in the summer of 2005 with a numb hand (and presumably before). It'll always just be the "WTs" to me. It is what it is. No point getting upset about something I can't change, eh? I'm going to keep talking about it here, but if I slip into self-pity, feel free to pick me up on it. What would be the point of that?

    I was knackered all day today; really bone weary, and I couldn't help but wonder if this was the fallout of the news yesterday, and if it was real fatigue or imagined fatigue. I didn't get home till about 8pm, and I nearly allowed it to stop me going running. But I didn't do any exercise yesterday either, and I was determined not to let this get on top of me, so I got changed and I went out into the dark.... and it felt great. I ran 4 miles and I felt the fatigue lifting off me. I may reach a point where I can't do stuff like this (as we all may), so I'm going to do my damndest to do what I can now.

    Lisa - it was an *excellent* birthday thanks!


  5. *gulps, hard*

    I'd say "stay positive", but that seems rather superfluous. So I shall simply follow your example.

  6. Heya. I know I never comment, but I always read. I'm sorry to hear that your specialist feels your condition is progressing, but I have always been so impressed by how you've approached this and I'm glad you're staying positive. It's inspiring to read, and as another one of the commenters said, it puts some of my worries into perspective.

    It occurred to me that another one of the handful of bloggers I follow (by some strange coincidence) has multiple sclerosis, which she writes about now and then. She's also just a fantastic writer. You can find her at http://tokyo-girl.blogspot.com/ if you're interested in reading someone else's experiences.

  7. ST, I'm real sorry to hear that. I hope you know that people all over the world are thinking about you and C, and hoping and praying for the best. Stay strong and good luck my friend.