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Author Topic: For those of you worrying about muscle weakness, fasciculations, and ALS  (Read 20023 times)

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Offline justagal

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Last fall my cousin passed away after an 18 year battle with Primary lateral sclerosis (PLS). This is a form of ALS that is much, much more rare. It has the same symptoms but it takes much longer for your muscles to waste away, and you never fully lose the use of them. Nearly, but not completely.

This is what happened to him. 18 years ago he was walking with his wife and one year old daughter. He tripped. His foot kind of got caught beneath him. Sort of like if you trip over a rug. He didn't think too much of it till it happened again later that day. His wife said she had noticed him tripping some in the prior week.  He moved his ankle around and tried to stand up on his toes only to discover he COULD NOT stand on his right foot up on his toes. He went to his doctor, then to a neurologist. They did a MRI, nerve test, etc and basically said there was something wrong, but they didn't know what. They key to this sentence is a doctor said there WAS something wrong. He could not bear weight on his right toes.

From that point forward, his foot/ankle never worked right again. He couldn't lift his toes up with his foot placed on the ground. It didn't come and go. It was always there, and it only continued to get worse. He could not lean back on his heel nor could he stand up on his tip toes. His ankle would collapse.  He didn't have a hard time doing it, or think maybe it didn't feel right, he could NOT do it even one time.

About eight months passed and he was tripping on a daily basis, several times a day, when he noticed he started slurring his speech ever so slightly. He actually didn't notice it, his wife did. She asked him if he had been drinking. Again, he never spoke normally again after this point. That was the start of his tongue problems. It was then he received his diagnosis. At first they said it was ALS but then when his symptoms developed so slowly and in a different pattern, it changed to PLS.

I won't go into the details of all of his symptoms over the next 17 years so you won't be looking for them in yourself. I once had ALS fears myself but after talking to my Uncle I found out I had nothing to fear.  This change in his ability to use his foot was drastic. He didn't have fasciculations until he was no longer able to stand bearing weight on his legs. This was YEARS into the disease. Also, before the fasciculations even started, he had muscle spasms so bad his fingers would claw up and he couldn't straighten them back out. In almost every picture I have of him, his hands are in claws. Same with his legs- so bad his leg would go stiff and he couldn't bend his knee. Again, years into it. There was nothing slight about any of it. Once a symptom hit, it was there and it was there for good. There was no mistaking it.

So if you can open a jar of pickles, your hand is working fine. If you can turn the handle of a door, it's fine. If you can walk up two stairs, your feet are fine. Anxiety is a beast, that's for sure, but there is no mistaking the true symptoms of ALS or PLS. I hope this helps as it sure helped me. Now if I think I am slurring my speech I ask my husband and when he says I sound fine, I believe him and recognize it's my mind playing terrible tricks on me once again.
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Offline sixpack

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LOVE it

sad to say it.  BUT love your post.  Hopefully your post has enough slap in it to help some of our nuero nasty crowd :winking0008:
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MOST anxiety occurs on a subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state

Offline justagal

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Thanks. I was going to post a picture of him with his faced blurred out so people could see what true cramping and spasms in your fingers looked like but didn't know if that would a good idea.
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Offline RohnboSlice

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Justagal

Thanks for your post. It does sadden me that your cousin had to go through this, but many on here can learn from his tough journey.

I am trying to come to grips with the fact that I do not have ALS or MS and have good and bad days with my beliefs. I do know that every single day my left forearm and hand do not feel like they used to. (Why is this?) My right calf and foot do not feel like they used to. (Why is this?)

The hardest thing is not knowing why these parts of my body feel this way. Although they don't feel better from one day to the next, they don't feel worse and I guess I have to take some comfort with this.

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Offline sixpack

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could be hit or miss.

I have a pic of my daughter in the gallery that shows her muscle atrophy.  I will sometimes suggest people take a look at her if they are worried about muscle atrophy.  Google is so tough on people here.  We just read, then digest, the information so erroneously.  We think muscle weakness is something like "perceived" or "feels funny".  I'm glad you could pointedly explain the difference.  I do the same when people worry about brain tumors.  My dad and sis had them and I can see how different the fear and the reality is.
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MOST anxiety occurs on a subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state

Offline sixpack

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Slice----

This is my "neuro" symptoms I've had.  Well it isn't a complete list   

 *Shocking pain down thigh and left arm--due to herniated disks
*Sciatica pain--due to stress and the disks
*back pain
*hip pain
*numbing and tingling over various parts of my body--fingers/toes/hands/feet/back/legs/stomach/groin etc
*tense muscles
*cramping muscles---feet/hands/hips/shins
*Twitching/spasms---all over my body.  My right thigh sometimes twitches quite hard--the entire muscle
*vibrating/buzzing limbs
*muscles feel weak/fatigued/heavy
*patches of skin or limbs that feel wet
*burning skin or chilled skin
*vision--jumpy eyes (not eyelid twitching, though I've had that), blurry vision, floaters (which have ZERO to do with MS), sore aching eyes, pain behind eye orbits
*sore aching muscles and joints--name a muscle and a joint and it's hurt me
*headaches---that just won't go with meds
*sharp/shooting/jabbing pains down my arms or legs or stomach or head
*dizziness--sometimes mild; sometimes I've been off balance.  Once it was a 'dizzy day'-I spent most in bed
*head feeling swirly
*jolting awake, trouble sleeping, waking with a panic feeling
*forgetfulness
*trouble saying words--saying the wrong word repeatedly
*face pain--primarily my right side of face--pressure
*TMJ pain
*ear pain
*trouble swallowing
*Stress incontinence--buy hey I've birthed quite a few kids
*very fatigued/tired
*trouble sleeping
*when anxious--fast movements muck with my eyes--makes me somewhat dizzy/headache--ie.  watching the page on the computer scroll down

This link takes you to a list of the most common anxiety symptoms:

http://www.anxietyzone.com/index.php/topic,17050.0.html

I don't live in a constant barrage of aches/pains anymore.  My mind and body have calmed some.  But it takes a leap of faith, several actually.  You have to accept logically (the easy part) and emotionally (the hard part) that anxiety can and will muck with you in all kinds of ways.  Once you can do that you will start to see the light at the end of the tunnel.

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MOST anxiety occurs on a subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state

Offline justagal

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Do those body parts still work? If so, that should give you a huge sense of relief.

In 2009 I went through what I like to call the lost year. I feared every disease known to man kind all due to neck issues which were causing numbness and tingling. This was in my neck and affected my left arm and hand. Before I knew it, I was having leg problems. Then foot problems. Then hip problems. Lower back problems. Things hurt. I felt like my left leg wasn't as strong as the right. Were my fingers functioning properly? Bam- back to the doctor I would go.  I went to doctor, after doctor, after doctor. I got MRI after MRI. They all told me the same thing. I had disc issues.  After a solid year, I got focused on something else and here I sit, two years later, with no issues. No more fasciculation's. No more weakness in my left leg. No more numbness and tingling. The only difference is my neck is better, and I am no longer looking for problems. One of my doctors actually said "we don't look for problems, we address them when they arise". I was looking for every problem and every symptom I could find, googling it, and self diagnosing. It's a terrible way to spend your days but I couldn't help it.

Something else about your post just occurred to me. When my cousin was developing symptoms, it was on one side of his body and then moved to the next. MS works the same way as my ex-husbands grandmother died from it and I drilled her with questions till she asked me to stop. If you are having symptoms in your left upper extremity, and your lower right, that pattern doesn't match ALS, PLS, or MS. It would be one side totally, and then the other.

I hope this helps and your find some peace sooner than later. It's such a terrible feeling and it seems like it will never go away.
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Offline justagal

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I should add my ex-husband's grandmother lived with MS for almost 57 years before she died and she was one of the happiest, most well balanced (mentally), person I have ever known. She was in her 80's when she died.
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Offline naynaydevil2

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Terrible situation for your cousin, but great post for this forum. You have helped ease my fears ----and as six says...slap some sense into me lol. Of course with my level of health anxiety, nothing will fully vanish my fears until I do something about it.

Anyhow, again...great post.

and I like the quote from your Dr. --- "we don't look for problems, we address them when they arise"  ;D
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Offline RohnboSlice

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My afflicted body parts don't work as well as they did before, but they do work. At times I have found myself holding my left arm with my right hand while standing - something I didn't notice at first. My right leg felt so much pressure in my knee and fatigue from all the twitching it went through that I was limping for about a week. Yes, it has gotten better (a great sign), but I still walk different than I used to.

Sixpack- I know it may be hard to say with so my symptoms reported, but approximately how long did some of your symptoms last? Did they come and go or were they persistant for weeks on end?
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Offline sixpack

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My afflicted body parts don't work as well as they did before, but they do work. At times I have found myself holding my left arm with my right hand while standing - something I didn't notice at first. My right leg felt so much pressure in my knee and fatigue from all the twitching it went through that I was limping for about a week. Yes, it has gotten better (a great sign), but I still walk different than I used to.

Sixpack- I know it may be hard to say with so my symptoms reported, but approximately how long did some of your symptoms last? Did they come and go or were they persistant for weeks on end?

it was a mixed bag, slice.  some were very persistant--ie twitching, feeling weak, vibrating; some were here and there--ie dizziness; and some were just once or twice--ie trouble saying words...

What helped me the most was finally accepting that this junk absence REAL weakness, means nothing horrid other than anxiety.  I finally rounded the corner. 
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MOST anxiety occurs on a subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state

Offline AshleyRN

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Slice----

This is my "neuro" symptoms I've had.  Well it isn't a complete list   

 *Shocking pain down thigh and left arm--due to herniated disks
*Sciatica pain--due to stress and the disks
*back pain
*hip pain
*numbing and tingling over various parts of my body--fingers/toes/hands/feet/back/legs/stomach/groin etc
*tense muscles
*cramping muscles---feet/hands/hips/shins
*Twitching/spasms---all over my body.  My right thigh sometimes twitches quite hard--the entire muscle
*vibrating/buzzing limbs
*muscles feel weak/fatigued/heavy
*patches of skin or limbs that feel wet
*burning skin or chilled skin
*vision--jumpy eyes (not eyelid twitching, though I've had that), blurry vision, floaters (which have ZERO to do with MS), sore aching eyes, pain behind eye orbits
*sore aching muscles and joints--name a muscle and a joint and it's hurt me
*headaches---that just won't go with meds
*sharp/shooting/jabbing pains down my arms or legs or stomach or head
*dizziness--sometimes mild; sometimes I've been off balance.  Once it was a 'dizzy day'-I spent most in bed
*head feeling swirly
*jolting awake, trouble sleeping, waking with a panic feeling
*forgetfulness
*trouble saying words--saying the wrong word repeatedly
*face pain--primarily my right side of face--pressure
*TMJ pain
*ear pain
*trouble swallowing
*Stress incontinence--buy hey I've birthed quite a few kids
*very fatigued/tired
*trouble sleeping
*when anxious--fast movements muck with my eyes--makes me somewhat dizzy/headache--ie.  watching the page on the computer scroll down

This link takes you to a list of the most common anxiety symptoms:

http://www.anxietyzone.com/index.php/topic,17050.0.html

I don't live in a constant barrage of aches/pains anymore.  My mind and body have calmed some.  But it takes a leap of faith, several actually.  You have to accept logically (the easy part) and emotionally (the hard part) that anxiety can and will muck with you in all kinds of ways.  Once you can do that you will start to see the light at the end of the tunnel.


I think you have responded to another post that I did on my eyes...well the jump eye thing is still going on and I am on the verge of going to the ER because of it...I am so overwhelmed with fear of what it could be...I got my MRI results and they said my brain is normal...How long did your jumpy vision last? I also seem to be rather sensitive to light and have a headache that is mainly in my forehead and behind my eyes.
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Offline sixpack

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as soon as I relaxed my symptoms began subsiding.
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MOST anxiety occurs on a subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state

Offline Millbrook1950

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Re: For those of you worrying about muscle weakness, fasciculations, and ALS
« Reply #13 on: September 23, 2013, 08:36:27 PM »
I worry constantly about ALS I feel I have all the symptoms.  Because I have health anxiety I sometimes feel doctors don't always  listen
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Offline astroturf

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Re: For those of you worrying about muscle weakness, fasciculations, and ALS
« Reply #14 on: September 23, 2013, 09:59:45 PM »
This original post was so incredibly helpful to me. Thank you.
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