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.
Saturday, September 29, 2012
Monday, April 16, 2012
I write with my right, except when I have to use my left
My abnormal gait is now normal. Hey, who knew, exercise works! So that's the good news.
Weird tendonitis (or tendinitis, depending where you're from) in my right arm is less desirable. It's not the end of the world, but imagine a bad headache in your arm. A bad headache that gets worse at night. All night. Every night.
Also, I'm right handed and I could barely use my right hand this past week. Its mending nicely now.
So I've been teaching myself to write left-handed. It's going well. I first learned to do a leftie scrawl* a few years ago after a horse-riding accident†. After six months of effort I wrote like a six year old. This time around I decided to get serious and practice writing the way children do at school, using worksheets.
*dignifying what I produced by calling it writing is a stretch.
† my sore arm may be lingering after-effects of this mishap.
‡ my archaic use of the term 'cool' and my lack of appreciation of tagging I have revealed how hopelessly middle-aged I am. But I'm pretty sure you guessed that anyway.
Weird tendonitis (or tendinitis, depending where you're from) in my right arm is less desirable. It's not the end of the world, but imagine a bad headache in your arm. A bad headache that gets worse at night. All night. Every night.
Also, I'm right handed and I could barely use my right hand this past week. Its mending nicely now.
So I've been teaching myself to write left-handed. It's going well. I first learned to do a leftie scrawl* a few years ago after a horse-riding accident†. After six months of effort I wrote like a six year old. This time around I decided to get serious and practice writing the way children do at school, using worksheets.
And guess what: it works. Tracing the letters really does show your hand what to do! One of the hardest things turned out to be making sure your round letters are round. My writing reminded me of the local graffiti: when our local "yoof" paint a tag, the letters are very spiky. I now wonder if they're using their non-dominant hand to disguise their handwriting? Or do they just think (mistakenly) that it looks cool‡?
I haven't lost the use of my dominant arm for good, but this is the third time its been (temporarily) out of action, so it seems like a good idea to share the load. At worst I've given my brain a much-needed workout. And gained a new appreciation for the persistence and determination of children aged 6-10.
Next I'm going to teach myself one-handed knitting. Yes, I am serious - ask Dr Google if you don't believe me.
*dignifying what I produced by calling it writing is a stretch.
† my sore arm may be lingering after-effects of this mishap.
‡ my archaic use of the term 'cool' and my lack of appreciation of tagging I have revealed how hopelessly middle-aged I am. But I'm pretty sure you guessed that anyway.
Thursday, March 22, 2012
When tight muscles lead to a dislocated kneecap
Hypertonic muscles, they're called. A month or two ago I was standing in my living room, minding my own business, when my knee began to really hurt. Couldn't think why. Figured an injury from earlier had decided to ache. Not much sleep that night.
Next morning, while having a tentative poke around said knee, I discovered the muscles down each edge of the knee felt like metal cable, and the kneecap (patella) wasn't where it usually is, and wouldn't budge. I realized at that late point what had happened: the muscle spasm had dislocated the kneecap. I really, really wish I'd worked it out earlier.
Some aggressive self-massage (assisted by a wooden mallet) encouraged the tortured muscles to relax enough I could nudge the knee home. Instant 70-80% reduction in pain. It took a few weeks for the tortured tissues to heal up. No marathons for Ms MS - unless you count ADLs? (Activities of Daily Living... Like showering, cooking & housework generally now I come to think of it.)
My medical team prescribed a foam roller (DIY personal masseur)& to keep up regular massage. And lots of gentle stretching once the muscles are out of spasm. My Chinese masseur panicked when he first laid hands on me, tsking & tutting anxiously until I told him I have MS, "Oh, oh right, that's okay then", he responded. It's ok to be a total crock if there's a reason for one's crock-ness.
Next morning, while having a tentative poke around said knee, I discovered the muscles down each edge of the knee felt like metal cable, and the kneecap (patella) wasn't where it usually is, and wouldn't budge. I realized at that late point what had happened: the muscle spasm had dislocated the kneecap. I really, really wish I'd worked it out earlier.
Some aggressive self-massage (assisted by a wooden mallet) encouraged the tortured muscles to relax enough I could nudge the knee home. Instant 70-80% reduction in pain. It took a few weeks for the tortured tissues to heal up. No marathons for Ms MS - unless you count ADLs? (Activities of Daily Living... Like showering, cooking & housework generally now I come to think of it.)
My medical team prescribed a foam roller (DIY personal masseur)& to keep up regular massage. And lots of gentle stretching once the muscles are out of spasm. My Chinese masseur panicked when he first laid hands on me, tsking & tutting anxiously until I told him I have MS, "Oh, oh right, that's okay then", he responded. It's ok to be a total crock if there's a reason for one's crock-ness.
Five years since my first MRI
Goodness me, how time flies! I stumbled upon this interesting anniversary while looking for some mundane-but-critical paperwork. Its not something I fixate on daily, weekly or even monthly. Lately not even annually. So the 'About Me' panel is ever-so-slightly out of date.
Anniversaries are funny things... I felt both saddened and triumphant. To quote the inimitable Granny Weatherwax, "I aten't dead". Since the first MRI was to rule out delights such as bleeding, cancer or a stroke, that seemed moderately unlikely at the time.
Equally my life is quite different, in many ways, to what it was 5 years back. Better, in many ways. I believe I play a fair hand even with some very random cards. And a possible diagnosis focusses the mind wonderfully well. But different, and the weird Neuro shit was behind many of the changes. I definitely appreciate my body more, and I'm learning to be tender of its needs. I may look healthy & robust - in many ways I AM healthy & robust - I am also tender and delicate at the same time. I just spent several minutes trying to come up with a pungent & apposite metaphor, but I got nothin'...
Five years, like, wow!
Anniversaries are funny things... I felt both saddened and triumphant. To quote the inimitable Granny Weatherwax, "I aten't dead". Since the first MRI was to rule out delights such as bleeding, cancer or a stroke, that seemed moderately unlikely at the time.
Equally my life is quite different, in many ways, to what it was 5 years back. Better, in many ways. I believe I play a fair hand even with some very random cards. And a possible diagnosis focusses the mind wonderfully well. But different, and the weird Neuro shit was behind many of the changes. I definitely appreciate my body more, and I'm learning to be tender of its needs. I may look healthy & robust - in many ways I AM healthy & robust - I am also tender and delicate at the same time. I just spent several minutes trying to come up with a pungent & apposite metaphor, but I got nothin'...
Five years, like, wow!
Wednesday, February 8, 2012
One swallow does not a dysphagia make
I hate the flu. Soldier-on my arse, I can't get out of bed. For a week or more. Most of all, I hate that it triggers an upswing in symptoms. And those symptoms can take weeks - or months - to fade away.
Two new - possibly related - symptom this past month are voice problems and swallowing difficulty.
My voice is rough and husky ("you don't even sound like yourself") - I can't carry a tune in a bucket (unusual for me) and I sound a bit like a teenage boy whose voice is breaking what with the crackling and abrupt changes in volume. It hurts to talk too. The symptoms get worse as I get tired. It started out as laryngitis, which is going around, but it's now lasted longer than normal.
A few times I've choked while eating. Just a little choke: the feeling that the food is stuck just over the edge and hasn't gone down and for a couple of seconds you can't cough it up again either. Food & drink starts to go down the wrong way more frequently too. It's a bit disconcerting, to feel you have to approach food with caution.
I thought all this was just extreme post-viral fatigue from the flu, which it could be, or it could be a new symptom. Up to 40% of people with MS will experience voice problems, and dysphagia (swallowing problems) often go hand in hand with that. Although I've become pretty well informed about multiple sclerosis, I'd never heard of vocal problems, and I thought dysphagia only happened to people in the latest stages of the illness, so I was surprised and rather dismayed to discover my error. One more thing to monitor.
Things seem to be settling down again now. I haven't choked since the weekend. As with all weird neuro shit, I have to remind myself that one swallow does not a dysphagia make.
If it keeps up for more than another week, I'll take myself off to the speech therapist for evaluation and help. Like the disordered gait, while it seems nothing much to a regular person, a trained clinician can often identify where the problem is, and may even be able to fix or work around it.
Two new - possibly related - symptom this past month are voice problems and swallowing difficulty.
My voice is rough and husky ("you don't even sound like yourself") - I can't carry a tune in a bucket (unusual for me) and I sound a bit like a teenage boy whose voice is breaking what with the crackling and abrupt changes in volume. It hurts to talk too. The symptoms get worse as I get tired. It started out as laryngitis, which is going around, but it's now lasted longer than normal.
A few times I've choked while eating. Just a little choke: the feeling that the food is stuck just over the edge and hasn't gone down and for a couple of seconds you can't cough it up again either. Food & drink starts to go down the wrong way more frequently too. It's a bit disconcerting, to feel you have to approach food with caution.
I thought all this was just extreme post-viral fatigue from the flu, which it could be, or it could be a new symptom. Up to 40% of people with MS will experience voice problems, and dysphagia (swallowing problems) often go hand in hand with that. Although I've become pretty well informed about multiple sclerosis, I'd never heard of vocal problems, and I thought dysphagia only happened to people in the latest stages of the illness, so I was surprised and rather dismayed to discover my error. One more thing to monitor.
Things seem to be settling down again now. I haven't choked since the weekend. As with all weird neuro shit, I have to remind myself that one swallow does not a dysphagia make.
If it keeps up for more than another week, I'll take myself off to the speech therapist for evaluation and help. Like the disordered gait, while it seems nothing much to a regular person, a trained clinician can often identify where the problem is, and may even be able to fix or work around it.
Product review: Bambach saddle seat
If only every weird neuro shit problem could be solved by throwing money at it! Available here.
My back remains in a correct, natural posture while I work at a computer, write, knit, cook etc. My hips remain open rather than being held an a a 90' angle - this helps to loosen tightness.
If I do get back pain - from overdoing some task while not seated - sitting on my saddle seat will often ease it.
I can move around my house or office without standing up and walking: a boon on low energy days.
It does take some getting used to - don't just use it for a whole day on your first go. Bambach offer a most reasonable 2 week free trial.
Sunday, July 10, 2011
On becoming a cyborg
A cyborg is, according to wikipedia, a being with both biological and artificial parts.
Most of my artificial parts are to keep my environment sufficiently at bay that I can function, and to hold together the bits of me that are coming loose.
I have in-ear musicians filters and Sennheiser noise-cancelling headphones for different levels of noise.
I have nose filters for when my sense of smell overloads. (They work too.)
I have sunglasses most days, to keep the light levels bearable (and I have both an eye patch and a sleep mask for when darkness is required). I have reading glasses for close work. I carry a magnifying glass.
I have a hat, SPF 30 (Australian maximum) and a white cloth to put over my lap when I'm in the car so the sun doesn't trigger my heat rash.
I have a shoulder brace to keep my upper back in situ, and stabilize my shoulders.
I have a lumbar roll for sitting for any length of time, especially in automobiles. It creates the correct lordosis (arching of the lower spine).
I have orthotics for inside my shoes, to stabilise my knees and ankles.
Today I've bough myself a Dorsi-Strap to combat the slight foot drop and stabilize my ankle further. This will prevent fatigue when driving (I hope). Its supposed to improve my gait by making my foot follow through the step right to the toe.
Part of me laughs at how much paraphernalia is required to keep me on the road, so to speak. Part of me is glad this stuff is available. What's normal anyway?
Most of my artificial parts are to keep my environment sufficiently at bay that I can function, and to hold together the bits of me that are coming loose.
I have in-ear musicians filters and Sennheiser noise-cancelling headphones for different levels of noise.
I have nose filters for when my sense of smell overloads. (They work too.)
I have sunglasses most days, to keep the light levels bearable (and I have both an eye patch and a sleep mask for when darkness is required). I have reading glasses for close work. I carry a magnifying glass.
I have a hat, SPF 30 (Australian maximum) and a white cloth to put over my lap when I'm in the car so the sun doesn't trigger my heat rash.
I have a shoulder brace to keep my upper back in situ, and stabilize my shoulders.
I have a lumbar roll for sitting for any length of time, especially in automobiles. It creates the correct lordosis (arching of the lower spine).
I have orthotics for inside my shoes, to stabilise my knees and ankles.
Today I've bough myself a Dorsi-Strap to combat the slight foot drop and stabilize my ankle further. This will prevent fatigue when driving (I hope). Its supposed to improve my gait by making my foot follow through the step right to the toe.
Part of me laughs at how much paraphernalia is required to keep me on the road, so to speak. Part of me is glad this stuff is available. What's normal anyway?
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