jimmy leg

ok, enough of the political ranting. let’s get back to talking about me and my problems, shall we?

now, i’m not complaining (yes i am), things could be far, far worse. hell, i could be in haiti or, worse, stuck on a luxury cruise ship adrift off the coast of san diego.  yeah, i have this incurable, progressive neurological disease, and the medical community – or at least the small corner of it that i have so far accessed – seems to shrug and say, “no idea what causes it, no idea what makes it tick, no idea how to treat it, but you might as well try this (or that) drug and hope that out of the long list of potential side effects, you only get hit with the most mild and less bothersome, like headaches, sleep disturbances or a rash.” a friend of mine who is still unsure if he actually has ms or not was very quick to come to the realization that ms doctors really don’t know much of anything about the disease and only seem to serve as a clinical tracking service. cynical, but i think, after 8 years of pretty much continuous downward trajectory, i agree with him. as my former neuro said, “you might as well take something.”

i’m at the point in disease process  that the only real treatments are those that are intended to slow the progress of the disease (and which may or may not have been effective, there’s no way to know if my ms has been following the same course it would have followed had i left it untreated or if the various chemicals i have been flooding my veins with have done any good) and to address certain symptoms. at this point, my only real issue is these leg cramps or spasms that seem to defy treatment. i’ve had them for as long as i can remember, way before any thought of ms. i thought they were normal – any attempt to describe them to various doctors had been met with shrugs.

try this: clench the muscles in your hand as tight as you can for two seconds. release for five seconds. repeat indefinitely. that’s what i get in my foot and lower leg, every evening. it starts at about 4 or 5 pm, and can appear in either leg – fortunately it has never hit both legs at the same time. it comes on every single night – just when i sit down to relax in front of the tv or to read a book. before i was diagnosed, i did a little research and found two treatments. one suggested that it was caused by dehydration, another that calcium/magnesium could treat the situation. both have worked somewhat from time to time, but both have also not had any effect more often than not. i was surprised to find that magnesium was regarded as a very effective muscle relaxer. also found the hard way that a little too much caused a diarrhea -like effect (what do you think hailey’s m-o is?)

i have tried several prescription muscle relaxers – clonazepam, baclofen and soma most recently – all of which have been effective in the short term, but all of which sooner or later lost their effectiveness. they made me sleepy to one degree or another, which was good – if i could be made sufficiently sleepy, i could sleep through the spasms, at least until the drug wore off.

but i have come to the conclusion that it’s not a matter to relaxing or even stretching the muscle, that the problem is not in the muscle, but in the messages my brain is sending to the muscle. my (stupid) brain is, for some reason, telling one leg or the other to do that. relaxing the muscle isn’t really the solution. the best treatment i’ve found is ambien, which will allow me to sleep through just about anything, but which is designed for very short term use. it pretty quickly becomes less effective, and requires larger doses, which can lead to some strange behavior (all of that sleep-eating, sleep-driving that you’ve probably heard about.) so, in the end, it’s really no better a solution than anything else.

so i’m left with a rotating arsenal of drugs that, each night, are kind of a crap shoot. will it work tonight? and for how long? my sleep pattern is completely random and disrupted, and i can never count on how much sleep i’ll get on any given night. and as any of you know who have ever suffered insomnia, it is one of the worst afflictions.

where am i going with this? nowhere but round and round, i guess. just venting and dissecting a symptom i rarely read or hear about. but right now, at 12:30 am, i think my leg has stopped spazzing, and maybe i can go back to sleep now. thanks for listening,

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4 thoughts on “jimmy leg

  1. Hi Steve…here’s some unsolicited advice (I apologize in advance, even though I’m about to do it anyway) regarding meds:
    Muscle spasms- Quinolone
    Muscle Relaxer- Soma– no drowsiness
    Insomnia- Trazadone (no sleep driving)
    These are random thoughts from reading your blog. (I am constantly assailed with random thoughts, but will not drag you down that stream).
    Ralph speaks so highly of you– I hope to meet you soon!
    Best, Patti

    1. thanks! i’m taking soma (it does make me drowsy). my goal is fewer medications. i have come to beleive that the jimmy-leg is a neurological issue, not a muscle issue. that said, i have no idea how to make it go away – maybe it never will. i will talk to my neuro about the quinolone, tho. looking forward to meeting, you as well. we love ralph, too!

    2. i don’t get it – trazaone is an antidepressant, (occasionally used to treat insomnia and schizophrenia), and quinolone is an antimicrobial. i’m confused.

  2. Did you go to one of your docs and tell them heart felt story only to have them say ah I’m not worried about that! We I guess you ain’t to worried beings it’s not happening to you. I on the other hand are scared simple!

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