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.

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.

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.

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.

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!

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.

Product review: Bambach saddle seat

This seat has changed my life.
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.

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?

Heat edema

A while back I wrote about heat rash. Now I have the option of swelling too.

I recently came on holiday to somewhere warm. In cold weather I stiffen up alarmingly so I've taken to fleeing the cold whenever possible. My warm refuge had a spot of warmer warm and I became a bit discombobulated with the heat. Yes, I get both heat and cold sensitivity symptoms - I'm just lucky that way, I guess.

Along with discombobulation, my legs and feet swelled up a bit. My ankles became 'tankles' and my thighs were oddly lumpy in sweat pants. Then we had a thunderstorm, and the heat broke, and within an hour I was headache free, clear-headed and… shrinking.

A bit random google research shows that heat odema is relatively common and usually benign. It is also quite prevalent among people with MS. (And people who are overweight. And women who are menopausal. I score 2.5 out of 3.)

Up till now I thought I was imaging things.

One website mentioned that some people with MS find that moving to a very stable, mild climate really helps their symptoms. Once I would have assumed that was a solution for 'rich' people. Now I'm beginning to understand you'll make a lot of sacrifices to feel well and move freely.

Why I need my sleep...

Buried in an article about rehabilitation and MS, I found an interesting mention of fatigue caused by brain plasticity. Seems those of us with MS may need our (extra) sleep to rewire our brains to work around the damage:

Although we have traditionally managed fatigue with a variety of medications, recent research suggests that it is possible that we may be doing to a disfavor some of these patients. Although many MS patients are disabled by their fatigue and need to aggressively treat it with medications, the sense of “tiredness” noted by some patients may be related to the progressive establishment of new brain traces “plasticity” occurring in a condition which produces ongoing neural degeneration. Clinicians often note a disconnection between the marked brain atrophy present in an individual patient (implying significant loss of pre-formed neural pathways) and the ability of such a patient to function. To function as well as they do, extensive plasticity — confirmed by imaging studies — has occurred in these patients.

What is required for plasticity to occur most efficiently? Studies in rodents demonstrate that new learning requires fairly immediate slow-wave deep sleep to encode newly learned information. Additionally, studies in volunteers confirm this in humans. It appears that the consolidation of new brain traces for efficient learning requires a fairly immediate period of slow-wave sleep to allow for the “offline” processing required for new synaptic plasticity. Consequently, the question arises as to whether it would be better for MS patients to have more periods of deep sleep rather than take drugs to stay awake. Are tiredness and fatigue trying send to the message “Give this brain sleep?”

If anyone wants me, I'll be taking a nap.  And possibly removing all caffeinated beverages from the house.

Knees up, mother brown

Improvement in my gait, thanks to exercises involving tapping my toes while weight bearing on the other foot. I no longer list to one side. So far, so good.

Hadn't had much luck doing the next stage of hip muscle development, the modified hip abduction exercise (aka "clam shell exercise"). They were sending my muscles into spasm. Not desirable. They're supposed to make walking easier, not harder.  Beginning to feel a bit despondent about my progress, when I was sideswiped.

As an aside, I asked the neuro-physio if it's normal for knees to grind.  My patellas grind when I extend my leg. Neuro-physio had a feel, and it's common but not desirable. The kneecap is being pulled out of its proper alignment because one side or the other of the leg muscles is over-developed (or under-developed). In my case, my inner knee muscle - vastus medialis (a.k.a. 'teardrop muscle') is weak, and my outer knee is over-strong. It can happen the other way too.

My legs have been experiencing difficulties for much of the past year. It's been one damn thing after another. I actually started to cry, because when you have possible MS, problems with walking are a bit of a hot button. My neuro physio is remarkably upbeat about this. It's just part and parcel of getting me rehabilitated from a low point. It's like a car, if you don't get it serviced for a while, when you do it's going to be expensive and time consuming.

My advice: look after your body.  Once one tiny muscle/tendon starts going wrong, it's like dominos toppling. The next muscle or joint down the line is stressed, and before you know it you can't exercise until the current injury heals.

So I'll be taping for a couple of weeks, and have an exercise program that should put this right in a month to six weeks.  When I'll have a real knees up to celebrate.

Whole lotta shakin' going on....

Here is the best all-around article I have found on the subject of tremor, courtesy of the Cleveland Clinic Continuing Education.

The technical jargon of tremor may be confusing at first.

Frequency is how fast you tremble.

Amplitude is how far you (or your body part) move when you tremble.

Hz (short for hertz) is a standard international measure of frequency.

This wikipedia article has a nice illustration of blinking lights at 0.5 Hz, 1 Hz and 2 Hz. Many 'weird neuro shit' tremors operate at 4-12 Hz but lights flashing above 4 Hz per  second (4 flashes per second) can cause migraine or even seizure in some unlucky people.

A low amplitude, high frequency tremor is the sort of not always visible tremor MS sufferers often describe as 'buzzing' or 'vibrating'. A high amplitude, low frequency tremor would be a slower pulsing, but more visible.

Tremors alone don't mean MS, as they can be a reaction to some medications, alcohol withdrawal (aka delirium tremens or 'the DTs'), or a benign condition known as Essential Tremor.

Until a tremor gets so extreme it interferes with your daily life - you have trouble writing or spill your food constantly or can't get your key in the door - it won't be medically significant.  It's a thing, it means that you are sick or you have a mild neurological condition (or both), but chances are you guessed that before the tremor came along.  The doctor is unlikely to say, "Ah hah! I note your tremor oscillates at 8 Hz and therefore my uncanny diagnostic instincts tell me it is definitely Essential Tremor and not multiple sclerosis as you have feared..."

My tremor, which is mostly invisible, gets worse when I'm very tired, sickening for something, or have had too much stimulant (coffee, chocolate or alcohol). Now that I'm used to it, I find it a useful 'final warning' that I'm overdoing it.

Yesterday, I ran a few blocks on an urgent errand for someone. At the end of that, the combination of adrenalin and unusual exertion caused my hands to shake far worse than usual and I couldn't unzip my bag, open mail or hold a cup of water without spilling. A pity, because I enjoyed the run itself, unaccustomed as I am to public sprinting...

Proprioception and gait abnormality

This year my physical stamina took a hit. A succession of minor injuries meant I couldn't exercise until I healed. Healing was taking forever, with one damn thing after another. My physio finally pointed out that "only some of the problem seems to be bio-mechanical... the rest seems to be...the other thing...".  The other thing being possible/probably MS.  (Unless that was code for conversion disorder?)

The physio is charming, caring and kindly, but I gained the distinct impression that treating someone who can't be completely cured is a bit of a 'downer'. Suspecting that was the physio's attitude was a bit of a downer for me, too.

So I researched neurological physiotherapy. For a physio who routinely treats those with moderate to advanced MS, Parkinson's and Aquired Brain Injury, I'm a good news story. It's also reassuring to be treated by someone who believes they can help.

My proprioception isn't what it could be, and my gait is abnormal. A quick google suggests that CNS lesions and Parkinsons are the front-runners if it's not a mechanical issue (hip, knee or ankle damage) or a genetic disorder. Well, duh. There is an element of mechanical issue, the 'usual' joint deterioration of a middle-aged person, and some learned 'guarding'.

If you watch me walk, you probably won't see a problem, but my neurophysio can see it.

Gait and balance impairment in early multiple sclerosis in the absence of clinical disability.  (abstract)

Proprioception and locomotor disorders (google docs version)

Gait abnormalities in minimally impaired multiple sclerosis patients (abstract)

In plain English, brain lesions interfere with the pathways that determine some of the ways muscles work. Part of this can be caused by compensation strategies - your muscles stiffen up to literally keep you upright - which interfere with the normal proprioception.

The good news is that brain plasticity means we have the potential to be retrained in more beneficial ways. As long as we act early enough.

My exercises seem incredibly simple and 'easy'. Because they are working very specific muscles, and my brain, they are quite tiring - even the neurophysio finds them tiring - but if they increase my body awareness (proprioception) and the muscle strength of the weakened muscles, they will be well worth doing.

What's so only?

My most prominent MS-type symptoms are considered 'only' mild sensory symptoms.  Some come and go. Some are with me most of the time.

• Numbness or reduced sense of touch in some places. Odd changes in skin sensation: anything from a prickly feeling to actual pain (known in the trade as parasthesia). 
• Reduced or acute sense of temperature (thermoanasthesia). 
• Overly sensitive to light or sound (known in the trade as hyperesthesia). 
• Odd smells and tastes: sometimes the coffee is bad because the barrista isn't very good, and sometimes its just me (dysgeusia). 
• Below average balance (poor proprioception)

Tingling, tickling, itching, burning, numb, sensitive.  Really doesn't cover it.  Weird neuro shit is my term.

If you're a regular person, when something odd happens to your senses, you go to your Doctor because Something Is Clearly Not Right.  When you enter the twilight world of 'possible MS', 'findings suggestive of demyelinating disease', and other non-specific diagnoses, you eventually learn that no matter how freaked out you might be (initially), your doctor is unlikely to find your weird neuro shit 'diagnostically relevant'.

Your symptoms are also too vague to attract useful sympathy from your loved ones. They also tend to elicit encouragement to 'get out of yourself more', while the word 'psychosomatic' flashes from behind their eyes.  Or is that just me?

At this distance from my first MRI I understand that weird neuro shit is most unlikely to herald an inevitable decline to feeble invalidism on a couch. So I don't freak out on that account. Sometimes I even play with the sensory disturbance du jour.  There is a certain prurient interest in finding out how big your latest numb patch is, and testing how hard you have to poke your foot with a pin before you can feel anything. And don't get me started on how many times you can keep re-tasting that glass of wine your really, really, want to drink, to see if it's still disgusting.

The biggest problem with weird neuro shit is it undermines your confidence in your perceptions, your personal experience of the world, and that change is profound.

Try for a minute to imagine a world whether many, many small things are subtly "off" - but you're the only one who notices. Do you, or don't you, trust the evidence of your senses?

• When a meal tastes yukky, do you send it back or not? It could be just my funny sense of taste acting up. But if I ignore my own senses, and eat the dodgy meal, I could getting food poisoning.
• The stereo is too loud, and you'd like to ask your friend to turn it down, but last week at home you asked your partner to turn the volume down and it was only on 2...
• Is that a heat haze, or is it just my eyes going "googly"?
• Did I just get a static zap, or was that just weird neuro shit?

I reached a personal nadir recently, when I thought the shower was on the blink, because I wasn't getting hot water evenly across the showerhead. But when I stepped away to turn it off, my left arm felt hot water - it was only my right arm that thought the water was tepid.

Altogether, a fabulous recipe for self-doubt. I don't stress too much about weird neuro shit, I just make a note about it and it usually goes away again. But this second-guessing is a pain. And I'd like to know what's so 'only' about mild sensory problems.

Convergence insufficiency

Today while watching my partner scrub a wall, I noticed that my vision was kind of jerky. At certain points, it was like his arm jumped or fractured. I happened quickly, but continued to happen while he scrubbed.

Later on inside, I tried to play with the effect, looking in a mirror and waving my own arm about. It didn't do it.

I decided to do a Google. The results are that it may be a very mild nystagmus, but it's most likely to be a convergence insufficiency.  Reading the description of the symptoms was very 'ah ha!' - practically a BFO moment.

There is a relationship between accomodative insufficiency and convergence insufficiency but I can't yet make out the difference in layperson's terms.

Basically, if convergence insufficiency is inherited, it can be cured. There is definitely some underlying mechanical issues. In fact, I was given exercises for this when I was 17 or 18, when I was first prescribed glasses for reading.

It's got a lot worse in the past year or so. Now, usually when I do any close work my vision is blurry, especially through the mid-field. If I look in a mirror when I've been doing close work, my vision is blurry and distorted around the eye area. Sometimes I can't actually see faces.

Usually I have to do what I nowadays class as 'a lot' of close work: more than a couple of hours of intense reading/computing/sewing etc.  If I take breaks every 20 minutes, that helps too. Sometimes as little as a few minutes will be enough to trigger it, and the breaks don't cut it like they used to. It usually wears off after an hour or two or a good night's sleep.

It's not something I've actually talked about much. I do sometimes say my eyes have been 'googly' but I have not defined how this vision problem differs from my other weird neuro shit experiences.

It is different, and it is getting worse.  There, I've said it. From this I discern that I am more upset and worried about this than I let on.

New skin conditions

Yesterday I was potting a plant. My leg was in the partial sun. When I went to have a shower, preparing to go out to a lunch, I found a reddish lacy rash across my right thigh. It was slightly hot and 'uncomfortable' feeling - I realise that is not very specific.

I went to lunch, and had a nice time. Coming home I became chilled and wrapped myself in a blanket on the sofa. When that didn't work, I put on wool leggings. After a while although I still felt chilled, my leg felt hot and scratchy and uncomfortable again.

Over the next couple of hours the feeling increased with a general discomfort. Finally I noticed mild nausea and a slight headache and took some aspirin. About 30 minutes later, the various discomforts eased slightly.

Livedo reticularis is the purplish/blueish lacy rash that comes out when its cold. It can be benign in slender young women but in extreme cases its a sign of various auto-immune syndrome (lupus and Hughes disease being high on the list, with RA) but MS was not mentioned.

Erythema ab igne is the reddish/purplish lacy rash that comes out when its hot. Direct application of heat is the culprit, usually infrared heat. I do get it a little sometimes if I over-heat or over-apply my hot bag.

I do get both. I find it most significant that I get them on the right thigh, where I have other issues, rather than anywhere else much. They're not permanent, yet.

They join the list of skin conditions I already get: pityriasis, dermatitis, prickly heat, and, when I'm really lucky, boils.