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.