Early/Undiagnosed Sleep Trouble

[patsfan]

I am new to the ALS forums after a month or 2 of progressing weakness(not measurable, but exhausted easily) and lack of balance mainly in my quads. My voice seems to be weakening, making it tough for me to teach HS. I have had tons of twitches all over in the past month and some cramping in my feet.
First neuro visit is next week, but I have been totally unable to get any sleep or function for about 8 days. Doc prescribed a sleep aid which seems to get me about 3 hours of very light sleep each night, I don't dream and don't seem to reach deep sleep. Without the meds, I seem to get close to sleep and get strange "hypnic jerks" which bring be back to awake
My question is, did this sleep issue happen to anyone early on during Dx and are there any positive stories of hope that I can get back to normal sleep?

 

[Zaphoon]

Patsfan,

Welcome to the forum. I'm no doc but I've been through the diagnostic process. Your symptoms could be caused by any number of disorders/diseases and syndromes; some of which could be treatable or even curable.

I wonder if anxiety may have something to do with your trouble sleeping. Do you worry a lot about the possibility of having ALS? At this stage, you should just remove that fear from you mind. There are a lot of other "lesser" maladies that could be causing your problems. You could have Benign Fasciculation Syndrome, for instance. It's not a pleasant thing to have but it won't put you in a wheelchair!

Zaphoon

 

[BethU]

Never heard of sleep disorders as a sign of ALS onset. The "jerking leg" syndrome when falling asleep is common, and is treatable. Can't remember what they call it, but it's annoying ... I know people with it (none of them with ALS) and they have been treated successfully. You see meds for it advertised on TV.

None of us are doctors, but you're really picking the worst-case, least-likely scenario.

 

[patsfan]

BethU and Zaphoon:

Thanks for the quick and helpful advice.
As you say, I can blame most of this on the stress and fearfulness.
I have always been a GREAT sleeper, and this came on so suddenly that I am hoping it is simply stress.
It is helpful that at least from what you hear, inability to sleep is not much of an indicator.
That still leaves me with weakness/exhaustion in my thighs causing me balance problems as a teacher, and twitching all over including my insteps. At work as the day goes on, my arches in my shoes cause me pain and I actually have to remove my shoes.

Thanks again, and I will stay involved with the forums as this sorts itself out.

Patsfan

 

[patsfan]

Hello again.
I had my 1st neuro visit yesterday and wanted to give an update/communicate/seek advice.

Neuro did all the very basics (Hoffman, Babinski, walk on toes heels etc.....) after my GP had already done most concievable bloodwork. All bloodwork and neuro exam normal. Neuro was nice and listened, but pretty dismissive of any chance of MND from what he saw and saw no need for EMG. (He watched me for about 5 minutes as we talked and the only "fasciculation" that came up was my left toe moving in and out which it does a lot). His basic "strength" tests were all fine.

Obviously, I want to know I "don't" have this disease, and I think pushing for an EMG would put more stress on me than I could take right now. I think many of us (me) come here to find people who have experiences similar or advice.
Symptoms at this point remain feeling of weakness, unsteadiness, muscle fatigue in both quads equally for about 2 months or more. "Twitches" all over, usually single blips or so in feet, legs, and upper arms, weak voice. No obvious atrophy, but shoes that I have worn for years suddenly hurt in the arches. Seemingly ALL body muscles tight and sore. Developed panic attacks and insomnia which is making everything accellerate. Ativan seems to help and lessen the twitches.

I know, and so do my doctors, that I sound like a classic hypochondriac. (though I never have been in the past).

Anybody have similar experiences, symptoms, reassurance, advice, or just general communication? Is there any reassurance in the fact that both quads seem to have been affected equally and simultaneously? That Ativan seems to lessen twitching? That my symptoms seem to be across such a large part of my body at once?

If there is anybody there, thanks for listening and trying to help.

 

[joelc]

CONGRATULATIONS on a great examination. You should now be able to put ALS out of your mind.

 

[patsfan]

Thanks! It is great to know people are out there. I am working very hard to take this advice to heart and SLEEP.(Still no luck)

 

[trfogey]

If you do not know at this point that you don't have ALS, then you would appear to have either an emotional problem or a cognitive problem. Either way, time for you to move on. Good luck.

 

[Zaphoon]

Patsfan,

Allow me to play the devil's advocate. You spoke of changes in your feet such that your shoes give you pain around your arches.

Let's say it's a neurological issue that is causing your arches to rise, even though your exam was normal. In this case, a possible cause could be one of the following:

Muscular Dystrophy
Charcot Marie Tooth
Polio
Cerebral Palsy
Spina Bifida

As an added comfort, several of these are usually diagnosed in childhood.

Please note that ALS/MND is not on the above list.

Cordially,

Zaphoon