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BethU

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Couple questions ...

1) Is this an ALS symptom? (I don't think it is, but wanted to rule ALS out before wasting my valuable time on Google when I could be watching Lost online)

Dozens of times a day, I "freeze" into place. It happens when I'm walking ... it might take me several minutes to cross a room because I freeze in one position then "come to" and start walking again, and sometimes will freeze a few steps later. It happens sitting down, when I may freeze with my hand in the air, etc.

I think this is a Parkinsonian symptom, from what I've read and also observed of my husband. He has difficulty initiating movement (he's a Parkie), which is characteristic of PD, but he does not exhibit this "freezing" behavior that I have been having for several months.

I'm still concerned about Progressive Supranuclear Palsy (an early diagnosis) as reading the PSP forum, this "freezing into place" happens with PSP. Patients lock into certain positions ... maybe with their mouths open, arms out, etc ... and can't be "restarted" for I don't know how long. Reading caregivers messages on the PSP forum freaked me out. Also PSP is a form of dementia that can be very aggressive and I notice that my lability meltdowns seem to have a large element of anger and aggression in them lately.

This "freezing" could be one of those symptoms that appears, lingers a while and then disappears. But I know that PSP is considered halfway between ALS and PD, lots of overlap in symptoms with both diseases. So if anybody with ALS has had this "frozen gait" problem, please let me know!

The good news about PSP is that it's fatal. The bad news is that you live a couple years longer than with ALS.

2) Fasciculations.
There are no more fasciculations on my tongue. It's a little happy camper lolling around in my mouth doing nothing all day. So I assume the muscle is kaput. Does this mean my speech will stop getting worse? (Not that it could get much worse?) I am still able to generate noises that sound a little like speech and some people can understand maybe half of what I say. So it would be great if the end of fasciculations means the end of deterioration.

Thanks for any input.
 

ilgal

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Beth,
Don't know iif this is the same as the "freezing" you've experienced, but I've had freezing lasting several minutes in my hands. They lock in place and won't move. When I told the neuro, he said they were cramps.
As far as the fasciculations, I never had any in my tongue but my speech continues to get worse and worse. And some places, like my fingers, that used to jump around but stopped, continued to weaken after fasciculations ceased. So I don't think presence or absence relates to progression.
Just my experience.
 

rose

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Beth, I haven't a clue about the freezing in place. But, about the fasciculations... I know they are supposed be be caused by LMN, but I don't know if they are a way to measure the progress of the death of a nerve/muscle. I think until doctors and researchers are able to establish why they happen for sure, and maybe if one type of twitch is indicative of (for example) nerve irritation, and yet another type of twitch means there is a lack of communication between the muscle and the nerve, that one can't make an informed enough assumption. With me, my left thumb twitched all day, but for only one day this past June, and that was it. Well there is atrophy to be seen there, and it is weak, but my right thumb has more atrophy, and there is more atrophy going up that arm than the left one. I've noticed very few fascics with that hand, or in either arm. My legs have them pretty constantly, but again, there seems to be no correlation between where I see or feel the twitches, and where the atrophy is visible. ... I've read others on this forum who've said that the twitches stop when the muscle becomesuseless. I think if you find something out from Dr Google, that many here would be interested to know what the good doctor has to say. :)
 

ktmj

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Good grief Beth, how much crap can go on that we don't have answers for! Hope when you have the "freezing" you also get the euphoria, but you said that has kinda stopped. I could use some of that euphoria juice if you could bottle and ship it somehow.

Sorry Beth, don't have a clue. You keep plugging away - your spirit is amazing!:lol:My best wishes for you dear.
 

Al

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That's the first time I can remember anyone mentioning that symptom Beth. Strange indeed. Have you had a head MRI lately?

AL.
 

BethU

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Al, I had an MRI 2 weeks ago, but haven't heard the results yet. I'm also scheduled for waking/sleeping EEGs to check out the [possible] seizures I've had in the middle of the night. I know THOSE aren't ALS. :)

I was pretty sure this "freezing stuff" isn't connected to ALS. Hopefully this will be one of those mystery symptoms that goes away after a few months.
 

ptich

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I suspect there is a lot of overlap in Parkinson and ALS symptoms. I remember my lower jaw started shaking like crazy in mid 2006 when at rest with my mouth slightly opened. Then it stopped.

The "theory" says that fasciculations in a muscle start, and then go on until the muscle is completely wasted. But I don't think that is true. I have fewer fasciculations now than a year ago, but more problems with atrophy. Looks like just one of zillion symptoms of ALS that come and go, then come again and go again, while overall condition is deteriorating steadily...
 

Jennifer51

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Beth, whatever else do you have to put up with....I hope you get an answer soon...the only freezing I have is with my eyes and jaw, when it is clamped tight shut, but both of these only happen for say 10 seconds max. Wish you all the best.
 

olly

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hi beth.
sorry to hear about your latest problem,i can not understand what it could be but hope its nothing too serious and will disapear.
i hope the mri comes back ok,you really dont need something else going on.

about fassics,i had them for a long time in my foot before atrophy was noticed but not on the top of the foot now just underneath a bit.
i had fassics in my right side of the lower face/jaw but my left side of the face has more noticable muscle loss.
other areas that had fassics long ago are my upper arms,shoulders and left lower leg.
these have some degree of wasting.
i now get fassics in my right lower leg that i never had before,just soft rippling ones through out the day.
 
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