I paid another visit to the neurologist this afternoon. It's been nine months now since the symptoms first appeared, and three months since my last visit to the specialist. Last time around, there hadn't been any substantial improvement, but there hadn't been any new symptoms either, and we decided that the best course of action was to wait for another few months. I had mentioned that I didn't know if I was feeling better or if I was simply getting used to it. My neurologist decided that we should be positive and think that things were starting to improve. I was feeling a bit better, I suppose, but mainly I was in no hurry to go onto any kind of steroids or anything like that. My symptoms were annoying, but not really inhibiting.
Three months on and little has changed. There have still been no new symptoms, but I am increasingly being bothered by the old ones: mainly this is a weakness across my left shoulder and pins & needles and numbness in my left hand, but on a bad day I can also feel this in my other arm, across my ribs, down my legs and in my feet. Over the last couple of months though, these symptoms have been more physically limiting than previously (you might remember me moaning about it in February). I know that these things are all relative - after all, I still have the use of all of my limbs, I can still get up and about and do the things I normally do - but it was still depressing.
Over the last few days, I've been wondering about what I could possibly expect from the neurologist this time around. He's previously mentioned that this kind of thing usually hangs around for about 6 months before disappearing. That 6 months is long since up. Would I get any more diagnostic work? Perhaps another MRI scan or a lumbar puncture. Maybe he would feel he already had enough information to make a definitive diagnosis? I thought about all these things, but I decided that I needed to steel myself for him to tell me to keep waiting and seeing. The not knowing is actually the hardest part of this, and although I'm in no hurry to be diagnosed with something for which there is no cure, in some ways being told to keep on keeping on would be the most frustrating result of all.
Sure enough, that's exactly what happened. Wait and see. Come back in 6 months and we'll see how you are getting on.
This time around it was a little different though: we had the same conversations about how I've been getting on, how I'm feeling; he carried out the same examination as he always does and came to the same conclusion - that we should do nothing but wait. The language has changed though. We are now talking about "an episode" and that although there is "still a chance" that this would heal completely, there is also a "high percentage" that I will have "another attack". For the first time in my presence, the neurologist took out my MRI scans and put them up on his light board. He showed me the patch of inflammation on my cervical spinal cord that is causing all of my symptoms. It shows up as a very clear white patch. The damage to the myelin sheath of my spinal cord is what is causing me to experience these symptoms, and suddenly we were talking about a two year period of recovery. He also got out the scans of my brain. The purpose of all this waiting and seeing is to see if I develop new symptoms. New symptoms will mean that I have further patches of inflammation and will enable a positive diagnosis - and let's not beat about the bush here, the diagnosis would likely be Multiple Sclerosis... two words that the neurologist is noticeably careful not to use. The clinical diagnosis of MS is simply to have more than one of these patches of inflammation at any one time. The thing is though, that there are already a couple of patches in my brain that have caused some debtate between my neurologist and the hospital neurologist who first checked the scans. There are a couple of white smudges in my brain - and today I was shown them for the first time. They are clearly white marks inside my brain, but they are apparently not as clear as the one in my neck. I totally understand my neurologist's point of view. Why rush to a diagnosis until we are absolutely certain what it is. There is absolutely nothing to be gained as there is no treatment anyway, and certainly no cure.
So. There is a "high percentage" that I will have further attacks, and all we do now is wait and see if they happen.
If you're wondering what the hell I'm talking about, this is something of a saga that has been ongoing now for about 9 months. If you want to learn more then you should start here, them move on here, here, here, here, here.... that should keep you going. Do be sure to check out my brain though (if you look at the image on the top left of the first set of scans on there, you can actually see one of the ambigious white smudges - right in the middle of my brain, level with my eye socket...click to enlarge!)
Earworms of the Week
Because it's not a proper week without a few ohrwurms, is it?
10. "Kathy Wilson" - Wolfsbane
One of the shortest albums I own, and one I hadn't listened to in ages. Untouchable genius. He never should have left to join Iron Maiden.
9. "Jackson" - Johnny Cash & June Carter
I was reminded of how good this song is when watching "Walk the Line" the other day, but I stumbled across it again when I was listening to "The Man In Black" in the office. Guaranteed to raise a smile (as is "One Piece at a Time")
8. "My Sharona" - The Knack
What an intro.
7. "All Sparks" - Editors
Very much flavour of the month, but I listened to this album again the other day and it's really standing up well.
6. "In the Midnight Hour" - Wilson Pickett
Because you can't beat a bit of sweet soul music every now and again, can you?
5. "The Downeaster 'Alexa'" - Billy Joel
Not many musicians capture the troubles of the blue collar worker better than Billy Joel. I love this song, and I don't even know what a "striper" is, never mind why it's a bad thing that you can't sell them anymore.
4. "Stockholm Syndrome" - Muse
Pompous? Yes. It's great though, isn't it?
3. "Since U Been Gone" - Kelly Clarkson
Fiendishly addictive. This song is a guilty pleasure (your hear that Leah? yay!).
2. "Farmer in the City" - Scott Walker
From his last album, "Tilt". It's bonkers and seems to make no sense at all, but it's still brilliant.
"Do I hear 21? 21? 21? I'll give you 21. 21. 21"
He's a legend. Roll on the new album.
1. "It's Tricky" - Run DMC
Do I really have to explain why this is stuck in my brain? Just go and listen to it.
my experiences with OMS - YMMV
17 hours ago