paralysis vs. progressive weakness

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paralysis vs. progressive weakness

Postby leaflea on December 17th, 2013, 8:12 pm

Hi all,

I have done some searching and cannot find a satisfactory description of what progressive weakness looks like. Being unable to hold a cup or tripping to me indicates some paralysis, but what would the stages of first perceptible weakness to first indication of paralysis look like? And how fast does it move in ***? If anyone has any examples of what would be noticed before paralysis - like in stages? I know of someone who had it, and a few months after diagnosis and some weakness, but before paralysis, she had widespread fasciculations. She could still walk, but slower, and type but her speech was slurred (she had bulbar). At the time of her death she could still type and write and it affected her hands very little. Besides neurological examination, is there a way to differentiate perceived and clinical weakness - a way that does not include the obvious total inability to do some function? Sorry, I'm still a few weeks away from my neuro exam (but clean EMG :D ) and always wondering if I am weaker than I was this past summer. Since I don't lift weights or anything I could measure for certain, it is just difficult to know or have a way to guage. Looking for some reassurance and something to hang my hat on. I have not found any really good descriptives. If there are any physical therapists out here who could weigh in?

Thanks so much you all!
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: paralysis vs. progressive weakness

Postby RGB on December 17th, 2013, 11:19 pm

leaflea wrote:Hi all,

I have done some searching and cannot find a satisfactory description of what progressive weakness looks like[...]

(but clean EMG :D )


I'm going to be really annoying but I just can't help myself :) ...

You have a clean EMG, that test is a lot more sensitive than anything you are ever going to be able to conclude from getting information about weakness from the www and trying to apply it to yourself.

My consultant neurologist said "I can stick a needle in you and know within seconds if you have ALS", that's what you should be thinking about. You do not have weakness (lets not get bogged down in the details... your arms, legs, hands, feet and tongue still work) and you have a clean EMG. Rejoice!

I'm not trying to be dismissive of your worries, just trying to point out how unfounded they are.

RGB
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: paralysis vs. progressive weakness

Postby Yuliasir on December 17th, 2013, 11:50 pm

people with the bulbar onset are a bit different and ususally may die beffore full body would be paralysed.
In typical ALS death comes due to paralysis of diaphragm and in that terms is similar to crucifiction - slow and tormentous death from suffocation. Or ventilation and death from imminent pneumonia (however at good care people can live on ventilation for more or less prolonged time).

ALS is unique becasue due to destruction of both low and upper motor neurons it involves two types of paralytic disease - weak paralysis or paresis, when the limb just does not work, and spastic paralysis, when it does not work and muscles are contracted due to disruption of reflective arc - it is when the limb or its part takes weird position,, curled etc. Child paralysis is a spastic one for example. Typical weak paralysis is ptosis which you can see at the faces of stroke victims (half of face goes down) or in case of broken spine.

Depending on the ratio of related neuronal damage, and depending on individual rate of MN death, either type can prevail. Some people report extreme fatigue, slowed rate of operation of limbs, even pain - but those pains are spastic (not even crapms but deep and strong and non-released spasms causing contracture and soon full size paralysis). But what makes that preliminary station different from our excersise intolearnce or viral fatigue is that usually it turns into clinical weakness in few days, weeks, rarely months.
More typical (or maybe more known) is sudden loss of lower neuronal connection causing really instant failure to use upper or lower limb (in ascending way, from fingers to shoulder or from foot to tight). Sudden bulbar is also known, as well as more or less 'slow' one.

In any way, if the symptom doesn't result in neurological deficite (paresis, paralysis, loss of reflexes etc.) within few weeks, it is rather something harmless.

perceived weakness is a feeling that you are weak but in fact you can still do everything at well normal rate. In my worse days I used to pass a pensil between fingers one by one holding it - like in children games. If fine motorics is Ok then all the rest is usually a perceived weakness. Damaged innerwation of arm usually leads to strange position of fingers - so called monkey hand when at the relaxed position the thumb goes behind the other fingers AND CAN NOT BE CONSIOUSLY TAKEN ASIDE, or fingers have real well seen difficukties in spreading straight etc. (this often happens at the tunnel trauma for example becasue it is local nerve (not motor unit) damage), leg can develop foot drop (however just few days ago I read here a report form one of the medical fellows regarding an old lady with perceived foot drop).

Clinical are crusial then. people can deliberately or even (and this is most often issue) uncosciously simulate weakness - several BFSers, among them one of the most prominent cases - SuzyQ - had reported that they can not stand or walk without help, the old lady mentioned above had a foot drop and was walking with the canes - but clinical exam involves special easy ways to determine real, not depending of personal judgement, state of reflexes - believe me, NOBODY can control reflexes good enough :))) some of them could be conscuously suppressed a bit, like coughing or yawning, some biased or misniterpreted when self-testing, but at the clinical all truth becomes clear. Therer are also tests for muscular power like to resist the hand with a leg or other hand etc. Treadmill is also a good test - when the belt starts to move, you really either fall or try to keep on :))) the old lady was cured from several years of 'paralysis' by the treadmill test.

If you had clean EMG, then for sure your clinical should be OK. If you still can stand walk dofine movements, say 'blablabla' etc.- your innervation is perfect and you have nothing to worry about except what to do with the health anxiety.
hope this will help a bit
regards
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Re: paralysis vs. progressive weakness

Postby leaflea on December 18th, 2013, 12:43 pm

You both are a great help. Not annoying at all. Sometimes bluntness is really called for and I dish it out too. So, Thank You.

I am actually doing okay. Typically I am a stable person with the exception of occasional health fears. This past year I have felt more depressed as I have had many stressors, but not unstable or anything. While I dread disease and sickness, I do not fear death and am realistic and say instead of "why me" I would say "why not me?" Bad stuff happens. I was never promised a long life, but I've had a great one. Was feeling great right after the EMG when the tech was reassuring until my doc called and gave me the official report and then added "but be sure to keep your appointment with the neurologist" and my neurologist relative said "EMG is certainly reassuring, but best to have an exam by a neurologist." So, while my EMG is good news, I fall short of rejoicing knowing now it is not iron clad.

I'm doing better than before the EMG, that much is certain. It is interesting how I can see when others are being irrational, but have difficulty looking at myself. I keep remembering that before ALS ever entered my mind I was making mental notes of weakness holding on to the steering wheel and having difficulty keeping pace with my husband who has shorter legs - back in about August/September. Then the twitching started or I noticed it in early October and I put two and two together and it seemed to equal four. Now it seems like 3.5. But my wrists look WIERD, they really do, not in my head, verified by anyone I show including medical people and "atrophy" has been mentioned by a couple without my clueing them into my thoughts. My hands and feet since summer are all bones, veins and tendons, I seem to have lost all fat in them while gaining a bit in other places. Twitching in my wrists drives me insane. Then there is the bizarre presentation of Lymphedema last summer and I can't help but wonder if there is some relation between the two. My chiropractor suggested the twitching could simply be caused by the swelling. But that doesn't explain the other things.

Facts on my side: normal EMG, seem not much weaker since September, history of health anxiety (common here and history repeats itself), moderate to severe stressors just prior to the start of the twitching (common). I am working through a health anxiety workbook while I wait to get in with a Phd psychologist specializing in health anxiety (second on his list).

Thank you everyone for being here.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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