Saturday, September 29, 2012

New neuro: same old symptoms

Saw my new brain doctor. He's more personable and communicative than my previous experience of neuros. In fairness, overall he said much the same facts as my previous brain doctor, but he said it in a way that makes me feel I understand it better. And was less dismissive of the rather distressing weird neuro shit (he seemed to like that term).

Most of my brain spots are likely the result of severe migraines. I possibly don't rant about my migraines here because they are so much a part of my life.  I feel a bit helpless about them and was raised that what can't be cured must be endured. This is less helpful than you might think.

According to NewNeuro, my symptoms - all the weird neuro shit - are better covered by migraine than by MS. Even the motion sickness, oddly enough, since no one ever mentioned that before. If it wasn't for modern MRI showing us the Fruit Loop (my name for the big lesion that looks a lot like demyelination, see my user pic) he says I would never have been considered for MS. That said, I do fit the picture according to some of the international criteria. About which Neurologists argue endlessly.

Its a weird thing in itself, diagnosis. It's not that I want to have MS, its just that my other neuro/s hadn't really explained that migraine as I experience it is not "just a migraine'. When you have distressing and alarming symptoms that mean you can't live your life in a way you consider normal, hearing that sounds like: "it's just that you're mental". Even if my psychologist has told me categorically that I'm not. NewNeuro has managed to convey that I have a genuine, even serious illness that carries a significant and seldom recognised disability load, and which we must make every effort to ameliorate.

Sadly, it is impossible to absolutely rule out MS once you have a CIS (clinically isolated syndrome). 60% of people with CIS go on to develop "full blown MS" within 15 years. Especially if they have symptoms suggestive of MS.  Even my conservative old neuro wasn't prepared to rule it out, even though he wasn't entirely prepared to rule it in.

Another MRI scan, and possible lumbar puncture may provide more evidence one way or the other.  If the migraine scars heal up once the migraines are under control, AND I don't get another demyelination mark, AND my lumbar puncture comes back clear of infalmmation markers, he'd be confident to vote that I don't have, and probably won't ever have, MS.  I'm not eager to have a lumbar puncture, but it would be well worth it to find that I'm not going to progress to MS.  Less worth it to have an inconclusive result, or a result that does suggest demyelination. At that point, if I understood the conversation right, NewNeuro would want to start me on copaxone which has been approved for use after CIS.

Yes, possible MS is a very complicated topic, especially when you add what used to be called 'complicated migraine' into the mix.

I'm starting on a new preventative: nortriptyline.  Its a tricyclic antidepressant, when used in large doses (75mg>) and a treatment for chronic pain in small doses. I'm cutting a 10mg tablet in half for the next fortnight. Start low, go slow.  My experience with other preventatives:  SSRI, topomax, and a beta-blocker, were not encouraging. They all made my headaches worse and more frequent.

He feels I'm at risk of my episodic migraine becoming chronic. Having 15 days a month where I have some headache is not good. Not that I needed him to tell me that, honest.

The latest you-beaut epidemiology studies show that chronic migraine correlates with female, severe headache, overweight, limited exercise, and depression.  I suggested that frequent severe headache tended to limit exercise which might contribute to weight increase and these three together might have something to do with the last one.  He grinned at me. At least he had a twinkle in his eye. I'm sure I'll rant about the difference between correlation and causation again sometime quite soon.

So I'll continue to endeavour to increase my exercise and decrease my food without upsetting my  equilibrium and triggering another migraine.  I really wish the epidemiologists were migraine sufferers, I think they'd be less glib.

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