Diagnosis takes forEVER

My mood is fluctuating a lot as I deal with pain and weirdly variable ability levels. Sometimes I get up from bed and go “Ooo, I can walk to the other room and can do the laundry and stuff!” and then I wonder if other times I have just mis-read everything, or made it all up, or am completely bonkers. But no, pretty rapidly my leg starts to hurt like fuck again and I have to lie down. I’m still at about a 6.0 – 7.0 on the Kurtzke Scale.

Both legs are giving me trouble but the right leg is so much worse that I mostly focus on that.

Realizing that a large part of the pain is spasticity continues to be very helpful. Warmth helps a lot. If I keep my feet and legs very warm – under electric blanket, or in 2 pairs of long underwear and in my furry mukluks, then a giant chain of painful spasms is less likely to happen.

furry mukluks

This also explains some things from Physical Therapies Past. When the therapist would do passive stretching and traction and it felt great, we both interpreted it as taking pressure off the spine. But the machine to do spine traction alone didn’t help and in fact drove me nuts because i had to lie still and sort of strapped down and my legs hurt. I have been getting people to do more passive stretching along with a little massage. That helps. I find that after a bit of stretching if I just lie there without moving my leg at all, it stays quiet. If I stay in bed especially on my left side, then I can get up and walk around and the spasms aren’t so bad. (Until they just are again, and I don’t know why.)

So my PT was mostly about trying to make my muscles stronger, but they are already hellishly strong and also they aren’t paralyzed. Instead they spasm so hard that they hurt, and then I have trouble moving because they’re stiff and spasming and they resist. And moving in one direction to stretch one set hurts the other side that’s contracting. Something like that, I guess. And the PT I need to be having would be about trying to reduce muscle tone – not to improve it.

In short my usual feeling that I could do ANYTHING is probably true. I could run from a bear… or kick your ass… but then I’d fall over afterwards and pay some hideous consequences.

I had another MRI today, this time of my thoracic spine. I think the point of this one is to double triple check that I don’t have some kind of giant spine problem or tumor in there. My neck had some problems at C4-5, C5-6, and C6-7 (herniated discs and other stuff, but relatively minor). Especially at C4-5 where there is a bulge and some degeneration and moderate foraminal stenosis. That is the sort of stuff they expected to see in my lumbar spine, but didn’t. So, that stuff could explain the problems in my arms and hands and neck, I guess. But again those problems are like nothing compared to my leg, obviously…

It is the difference between “ow, my neck is bothering me a little” and “holy fuck I can’t walk and want to cry and am sort of thrashing around constantly from pain”.

Anyway, just now I took 2.5 mg of baclofen. I am very happy the 10mg tablets come in bitable form, so I can try a very low dose.

I found a usefully metaphor-laden description of spasticity though it is mostly for CP patients, it seems quite useful and helps me understand a bit. I figure I’ll research nerves, muscles, and this GABA stuff and write up whatever I figure out in a little report so I can be sure that I understand it clearly.

What these dudes say about low dose oral baclofen sounds sensible and non-scary to me. So that’s what I’m going to try. I’ll start with 2.5mg of baclofen once a day in the evening. Well, today at 5:30 because I was a bit desperate. I’ll try it for as long as I can deal with it, and see if that has any effect.

Right now I just feel a tiny bit more cheery and relaxed. My leg does feel less tight. As I try to move around it feels odd. That’s all I can say. Maybe a bath will help…

Here’s another random link to a description of PLS.

The disorder usually begins in the legs but can begin in the upper body or bulbar (speech and swallowing) muscles. The age of onset is generally between 35 and 66 years of age, with a median age of 50.

The incidence rate for PLS is difficult to determine. One study puts it at 500 individuals in the United States. However, many researchers feel this is an underestimate and the actual incident rate is closer to 2,000. The issue is further complicated by the fact that a good portion of people initially diagnosed with PLS actually have HSP or ALS. Most researchers indicate waiting about five years to observe symptom development before being confident of the diagnosis.

Note that bit about the five years to really know what you’re talking about with the diagnosis. Grrrrrreat. I know I have to get used to being vaguely diagnosed. I ride with it okay sometimes, and then have moments where it’s very hard. I just want to know… WHAT IS IT!

This part kind of made me laugh. Emotional lability, much?

Other symptoms that commonly occur include hyperactive reflexes, muscle spasms, presence of Babinkski’s signs, muscles spasms and pain. Some individuals report having emotional lability.

Dammit, don’t tell me I’m a neurotic poet because of this weird neurological condition! I’m just a neurotic poet! And I just laugh all the time when I’m mad or frustrated because, uh…

Oh well.

Emotional incontinence! Really… it’s funny…

How handy for explaining why I’m cracking up at bad poetry readings or meetings at work. No, really, officer! It’s my rare neurological disorder!

It could just be spastic paraplegia of some kind, maybe the wonderfully-named “Apparently Sporadic Spastic Paraplegia”. I could be a mutant!

This part is also quite true for me:

Many people find the tightness in their muscles worsens when they are angry, stressed, or upset. This may make it more difficult to walk and speak. It is unknown exactly how emotions affect muscle tone, but it may involve adrenalin levels. Most people also report increased stiffness in cold weather.

And about the uncertainty of diagnosis, this bit sums it all up very well:

Muscle spasticity and weakness can also be caused by other conditions including (but not limited to) Primary Lateral Sclerosis, spinal cord injury or tumors, cerebral palsy, multiple sclerosis, amyotrophic lateral sclerosis, vitamin absorption, and thoracic spine herniated disks.

Thus the MRI of my thoracic spine, where you’d think that any of my doctors would have started. My neuromancer thinks MS is unlikely & same with ALS because I would probably have more muscle atrophy or wasting. But neither of those are for sure ruled out.

Since it’s the same thing (from the feel of it) as it was from approx. 92-99, it seems doubtful that it’s ALS… since I’m not dead of pneumonia:

Upper motor neuron degeneration causes muscle spasticity and weakness in the voluntary muscles. It is disabling, but not terminal. Lower motor neuron degeneration causes muscle wasting, which eventually affects the respiratory system and leads to death.

That’s a comfort.

Meanwhile, life is pretty sweet. I get frustrated, especially with pain and times when mobility is hard, as well as with my usual state of fury with myself that I’m not productive enough. I’m driving (we’ll see, on the baclofen) and am spending most of my time in Deadwood City, but about 1-2 nights a week in SF with Zond-7. I spend most of the day in bed, getting up for small forays about the house. On a good day I do some light housework. (I can assess how mobile I am based on laundry: am I doing laundry at all? from the wheelchair? can I stand up to get stuff out of the dryer or do I have to ask for help for that part?) Other people are often in bed with me with computers or books, which is cosy. (Rook just brought me potstickers with sauce and some cranberry-grape juice laced with pomegranate! thanks Rook!) Periodically I beg for stretching or massages or I burst into tears and begin whining, but I am just as likely to be giggling, flirting, all on fire with ideas or cussing at some feminist controversy on the net or writing like a maniac or devouring a fabulous science fiction novel. This last week I’ve been able to drive, and if i can park *right* outside of a place then I can crutch in, say, to a restaurant, though I have to be sure I don’t have to stand up waiting or ordering and also that I won’t be wandering around looking for the bathroom. So mostly I stick to the wheelchair. Wheeling in the house is easier, but I’m doing some walking on crutches, cane, or just plain legs on the theory that it might help and if I can, I should, even if it hurts.

I need support from somewhere other than all you fuckin’ walkies, nice as you are. So I’m going to go lurk on PLS-Friends and the PLS corner on ALS Forums.

Mostly I’m clinging to the thought that I’m a mutant and have mere spastic paraplegia (SP) or Apparent Sporadic Spasticity (ASS) (no, not really; they made it ASSP, but I’m not fooled by that lame acronym-fu). That would explain where I’m at now, while warding off the scary future-swallowing-speaking-and-arm involvement. Maybe I’ll just make up my mind to believe that I’ve got ASS.

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