Old 11-15-2012, 11:43 AM #1 (permalink)
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Default My "I hope it's not ALS" diary

As I sit here pondering what to say, I wonder if anyone but me will read it. I've decided to start this because I've read a number of posts and blogs and can't find much on the initial symptoms, progression, and eventually, diagnosis of a MND. I don't want to forget, and if it turns out I do, I want others to gain insight from it as well.

I sit typing on the iPad, really the best mechanism these days since my typing is a bit muddled. I've been touch typing for well over a Decade, but now it requires me to think about every finger movement, so this is easier. Frustratingly slower, of course!

But no matter. I continue to twitch in my left shoulder and arm.. Still have weakness there, but always have since a neck surgery 5 years ago.. So maybe it's a little worse this month.. I'm not comfortable driving with that arm anymore, and I've always been a left handed driver, so that's annoying, as you can imagine.. I still try to keep it up in the 10 o'clock position, but well, it gets tired and eventually flops into my lap, darned 1 hour commute! The facis are interesting too, sometimes I sit there and think of it like waiting for the baby to kick- I used to watch my belly the same way..kick (twitch), kick (roll), kick (spasm).. Kind of a cool party trick if you ask me.

The facis started in my left deltoid. No worries there, it's my neck, right? I have degenerative disc disease and am a 38 year old trapped in the body of an 80 year old..(even now moving slow like an old fogey- just getting out of the chair means 1) grasp arms with hands, 2). Slowly push up to standing and make sure nothing is going to give out before letting go 3). Shaking out stiff spastic leg that refuses to move form a minute 4) take tentative step 5) realize I can still walk, albeit a little lopsided. But im getting older as i said.. Things move a bit slower. And then i go on about my day. I don't like to sit a lot, as you can imagine.. Unless I know I'm staying there for a while- like watching a movie.

So didn't think twice about a few twitches, all par for the course of being old. Then they started in my trapezius. Well dang, my neck must be getting bad again.. Doesn't hurt more than normal, but really, I can't think of any other reason I've turned into a human popcorn machine. Kinda funny in fact.. If it happened while i was talking with someone, with a pen in my hand (im a hand talker) the arm would jump and my pen would fly across the room... Laugh at myself a lot for throwing pens at people inadvertently!

Woke up a few weeks later to a twitching thumb... Well, that's kinda cool, look, it has a life of its own! Got really bad for a few days- another party trick, then stopped.. Not working quite right, I grab things between my fingers now because I broke a few glasses when I thought I had a firm grip and they tumbled to the floor. Oops.

Facis weren't done though.. Spreading to my forearm... REALLY annoying at first.. After about a week I noticed them less.. They are still there, like little worms and babies, kicking up through the skin, but not as forceful as they once were.... That arm is still weak, but I suppose it would be if a nerve was pinched for this long..

Went to the ortho for some hip pain...found I had very brisk reflexes, but nothing on X-ray. Did an MRI (I'm certainly no stranger to those, with my neck surgery) and the lumbar and sacral area and cord are just fine- another symptom of getting old.dang getting old sucks.. Talked with them about these horrible headaches I was waking up with and the night sweats- time to go see the neurosurgeon about my neck again...ugh. (turns out he no longer takes my insurance)- put that one off.. If it starts hurting, then I'll go.

There is more of course- my fight with the hair dryer , the buttons on my kids clothes, the convention trip in DC, which has a pretty big convention center where I finally gave up trying to walk and sat and thought to myself "oh crap"... And then asked for the nearest taxi stand...the fact that I now take the elevator at work when I used to take the stairs- because I'm an out of shape weenie, the pirate leg run that no one should have to be subjected to... But fact is, my arm is tired even from using the iPad, so I'm going to take a break..

Do I have ALS? Dunno. Hope not... I'm still convinced its just all a pain in the neck (literally)..
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Old 11-15-2012, 01:28 PM #2 (permalink)
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Default Re: My "I hope it's not ALS" diary

What do your doctors say is the problem? It doesn't sound like ALS.
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Old 11-15-2012, 03:08 PM #3 (permalink)
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My neuro isn't really sure, I am a conundrum apparently. She's running some tests since I flunked my neuro exam, so far I know I don't have a brain tumor. (yippee). Next up are cervical and thoracic MRIs and the EMGs.. Just need to get them scheduled...(I've found I'm fairly apathetic of late, getting lazy I guess.. Used to be that I was the planner, the social butterfly..not so much now...more of the antii-social hermit, guess I'll give them a call tommorrow)..

On the the hair dryer (not to mention washing my hair)... My hair has finally grown out a bit past my shoulders, after an ill advised pixie cut a few years ago.. But I'm starting to get really angry at it..(well, not my hair really, just that it takes so much EFFORT to wash and dry)... The past 2 weeks have found me going to work with a damp ponytail when I can get away with it, because when I'm washing my hair, I'm having to prop my arm on the wall, thinking to myself- does shampoo have to be so BUBBLY?!? It seems to take forever to get it out... Tried doing it with one arm..but I'm not a natural contortionist, unfortunately... The drying thing is way worse though.. I used to stand, flip my head over, dry some while bent over, flip up and do the full out, Jennifer Aniston blow-out, straightening and then curling with the dryer and a round brush...then I couldn't really keep my feet when I bent over, fell and my right legs would start shaking and give out (I remember making a pledge-I HAVE GOT to work out!).. So I started sitting to blow dry.. This week I can't hold the hair dryer up for more than a minute, so I pick it up, place my elbow on the counter and move my head around under it, all the while just wishing it would by DRY already..geez! Maybe it's time for a hair cut..

And don't even talk to me about getting dressed! I feel like one of my kids, sitting on the ground to get my undies and pants on (I figure I'll just wear dresses and skirts, much easier! And hopefully a distraction from the frizzy hair....if I'm lucky.

Fact is, no one knows, and I kind of don't want to know.. But of course I worry a little bit just the same- who wants to look at mortality or neurosurgery in the face and challenge them anyway?

So I grin (and twitch), bear it (and fall), and watch funny cat and baby videos online (you really can't NOT laugh and feel better during that) and go day by day..

Now, I'm actually procrastinating getting the laundry out of the dryer- getting on my knees to be able to get it out is somehow not very Suzie-home-makerish in my mind...good thing I've never aspired to be Martha Stewart!

Next story I'll document is the day I tripped on a throw rug and fell without grace (sort of.. Caught myself and ended up hanging sideways) which of course brought no amount of teasing from my kids, must have looked pretty funny! Who put that there anyway?
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Old 11-15-2012, 03:40 PM #4 (permalink)
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Default Re: My "I hope it's not ALS" diary

Argh, does anyone else really despise those supposedly convenient "resealable bags" that food comes in? I just spent ten minutes fighting with a bag of cereal, I tore it along the perforation like it said... And... Nothing, I think that was just a cruel joke.. Then I pulled it, prodded, tried to slit the opening with a knife.. Trying to preserve the "resealable-ness"... After practically beating it to a pulp, success! It's open! I refill our cereal container from it and then think... Dang! Now I have to try to squeeze it closed again... Whoever said that "advancements" make life easier?!?
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Old 11-15-2012, 05:32 PM #5 (permalink)
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Default Re: My "I hope it's not ALS" diary

I'll read what you added before answering you.
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Old 11-15-2012, 05:39 PM #6 (permalink)
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Default Re: My "I hope it's not ALS" diary

Get a referral to a neurologist for an EMG. Sounds like back problems and menopause to me.
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Old 11-16-2012, 12:21 PM #7 (permalink)
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Default Re: My "I hope it's not ALS" diary

Yep. Once again sitting in the neuro waiting room...ready to convince her it's my back...
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Old 11-16-2012, 12:29 PM #8 (permalink)
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Default Re: My "I hope it's not ALS" diary

believe in yourself , dont take the faux diagnosis or the anxiety line . keep your mind be strong but believein you
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Old 11-18-2012, 10:09 AM #9 (permalink)
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Default Re: My "I hope it's not ALS" diary

I'm going to assume an internet search brought you here because of the twitching and weakness you are experiencing.

Your symptoms are much too vague to even think about ALS at the moment. Given your symptoms are from your shoulder down to your fingers, while still being able to use your entire limb is a good sign (believe it or not). ALS typically affects a single region and then marches-on to adjacent regions; it does not typically affect an entire arm without debilitating certain regions first (as your story indicates). It sounds like a cervical issue to me. Furthermore, if your brisk reflexes are symmetrical, that can be normal.

Relax and let your physicians determine what is happening and stop trying to self-diagnose yourself. Bad things happen when people do that and it appears bad things (mentally and emotionally) are happening to you.
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Old 11-19-2012, 05:40 AM #10 (permalink)
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Default Re: My "I hope it's not ALS" diary

Yep, fingers crossed. The neuro I saw Friday was concerned..apparently I have a mild foot drop and off the chart brisk reflexes in my right leg (she kept testing them throughout..and I was thinking, hey! I'm not a toy!.. Although my response was so exaggerated that it made me laugh every time, probably not appropriate, but it struck me as really funny).. She saw the faciculations that have now spread to my shoulder and back, after I stretched, and then started slapping me on the arms and legs, looking for more I suppose. She said there is some nerve abnormality and scheduled an EMG on my arm and leg next week after Thanksgiving.. In fact, after she was playing with my fun reflexes over and over, my thigh started twitching in response- new spot, great....MRI of neck and thoracic spine this morning, at least I'll get a nap in before work...
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Old 11-20-2012, 02:54 PM #11 (permalink)
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update- MRI's were fine.. my back is that of an old lady, but no stenosis or cord compression. Was really counting on that. in the meantime, I've started faciculations in my calf and diaphragm (feels like a baby kicking.. which is kind of nice).. i really was hoping it was all just my arm (i.e., a back thing)...guess the EMG will be more telling..crossing fingers for BFS. anyone know if BFS starts in mainly one area?
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Old 11-20-2012, 03:08 PM #12 (permalink)
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Default Re: My "I hope it's not ALS" diary

also- I'm wondering, has anyone video'd their faciculations?. maybe mine are different? they hit the same muscles over and over, but it's not like they are jackrabbits.. it's more like; twitch (i can feel) in upper forearm, twitch (i can't feel) but my thumb moves, twitch, I can see in my shoulder in the mirror, twitch, very small, cant feel, on the underside of my arm.. they happen about every.. minute or so? sometimes more often, sometimes less, but never more than a minute..and I have to LOOK to catch most of them..i've not got the "constant" repetitive type- so this is good? the ones in my calf are VERY intermittant (when I notice them, cant keep looking at my legs while at work ), my abdomen is interesting, maye every 5 minutes or so? like I said- the baby kicking... would love some thoughts on this..
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Old 11-21-2012, 06:03 AM #13 (permalink)
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No, i haven't. But you mentioned getting night sweats. That is common in Hodgkins disease. Have you looked into that already?
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Old 11-21-2012, 09:07 PM #14 (permalink)
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I'm so tired.. Getting Harder and harder to do things.. Today I couldn't open the fridge door with my left arm..I don't even want to go anywhere because just getting dressed and in and out of the car is so exhausting..the twitching is now in my entire arm, fingers are starting to get in on the act too..this morning, while willing my hand to hold my coffee cup, just to prove that I could, the facis started up in earnest and didn't let up until I put the cup down...first time I've seen them in response to actually using the muscle...my shoulder and back seem about the same. The new twitches in my calf seem to be coming more regularly now, still in the same spot, but about every 10 minutes or so, where before just seemed to be once or twice a day..tomorrow is Thanksgiving, and I am Thankful for all that I have and will do my upmost best to function at top performance, or at least to fake it enough so that people don't feel compelled to cater to my needs.. I will not be a burden!
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Old 11-21-2012, 10:54 PM #15 (permalink)
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Wait for your Doctors to diagnose you. Good luck to you.
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