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jpsteeler99

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This is my experience with weakness in the early goings...

I know when I was being diagnosed, one of my biggest concerns was the "clinical weakness" and I never could get a good description or definition of what it was. I swore up and down that I did not have weakness. Now, that I look back, I had weakness and didn't even know it. It started in my left foot mostly but in my right foot as well. I could not lift my foot properly when walking and was tripping a lot. I couldn't run or jog. A simple task like running when you are 44 years old and I couldn't do it. I couldn't jump anymore. I could always touch the rim of a standard basketball goal. Not anymore, couldn't even touch the net. I played roller hockey and my speed and agility on the rink depreciated. I even talked to my team mate after a couple games and could not explain why my skating was off and slow. Stairs were next. Going up was not that big of a deal but going down, forget it. Had to grasp the hand rail and go really slow. The next thing I noticed was that I couldn't clip my fingernails with a standard fingernail clipper. I had to use the larger toenail clippers to get more leverage. I could still squeeze one of the hand exerciser squeezy things but I had lost the dexterity to pick up a screw or a coin off the floor. Dropping things and general clumsiness. I had read a few place on the internet that if you can stand on your toes, on your heals, jump up stairs with both feet, walk on your tippy toes and hold down the gas pedal in your car for long periods of time then you don't have ALS. WRONG - or as my kids would say EPIC FAIL. I could do all of those things and I was still diagnosed with ALS. Now it is almost a year later and I can still do a lot of those things except maybe jumping up the stairs. The weakness is getting worse and the twitching is driving me batty. My left ring finger and left bicep are in constant motion 24/7/365. Now, with all that said, I was only 44 when I was diagnosed and if you are older then you may have different experiences. I still say my first symptoms were fasculations but the weakness wasn't far behind. Could have been the other way around and I just didn't notice the weakness until it got bad enough to notice. Basically what I am trying to say is you may have weakness and not know it early on. It is not going to jump out at you when you go to pick up a gallon of milk and you can't do it. This weakness is not like that. It is very subtle and may not be noticeable. Feel free to chime in on what your weakness was in the early goings....
 

kiara

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Hi, I'm not diagnosed yet, still in the process but I understand clearly what you're saying. The problem is not if you can or not do things you used to do...the problem is that things you usually do without any effort start to require an effort it's not normal for an healthy person. I'm 33 and I know it's not normal having problem walking up stairs and down stairs, having problem drying my hair couse the arms feel weak and heavy, having problem walking for more than 50 mts couse legs are stiff and shaking. Ok I can still walk on my heels and toes, can still drive but this doesn't mean there isn't smthing seriously wrong with me. My first symptoms were arms weakness and twitching....and I thought it was something about stress related due to my work.....
 

curtrill

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JP,
Thanks for taking the time to share your story and exposing that those "ALS Home Test Kits" aren't always reliable.
 

HelenL

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As you said, the early signs of weakness are so subtle you don't notice them for a while... in retrospect I can see the weakness started a long time before I realized my foot wasn't working right. And what the heck was drop foot anyway? :)
 

ysabel

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Im not diagnosed anything and nothing is suspected to my knowledge. But i am on the waiting list for st vincint depauls neurology.

For me as it stands i struggle going up the stairs more than down.
But i find any walking to be far more difficult than previously.
I have trouble holding my phone up to my ear and have to switch off often.
The right worse than the left.
My right side is my dominate side. I definitely can't jump.
I cant stretch my arms over my head without muscle strain. Doc tried to get me to do this yesterday. Walking tippy toe forget it.
I am still waiting for answers. I am sory for everyone elses sufferings as well. There are some moments im more positive then other times i just dont know. But eventually they will figure me out.
Im going through tons of emotions. I misplaced my wallett here the other day and started to think someone may have taken it.... i started to get going quickly as i would normaly do in a frenzy.... then my body would not go and i almost fell flat on my face i forgot i cant just go like i used to.
But i found my wallett safe and sound in my suit case.
right now i feel like an intruder here because i dont have a diagnosis. Sigh..
Im truly sory that anyone should suffer. hugs to all.
 

HelenL

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Ysabel, I think anyone looking for answers should be able to come here... hoping that you find some better answers when you see the neurologists. It does look promising in that you seem to have issues in more than one area, as usually ALS usually starts in one area at a time. Be careful of falling and try to stay positive. Good luck and keep us posted.
 

ysabel

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usa
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city
Thanks HelenL
I do feel welcome here which is very kind. Just my own self conciesnes.
I'm reading some of the stuff here and getting more understandings. Which is helpful. I just really hope there is an easy solution. Im even trying my best to force those muscles a bit more.
But not over doing it.
I just want to get out of the frozen stage and get what i need done to get better.
I dont even know what all are the signs and do not trust dr google either.
I just have to be more patient. Like i said im roller coasting emotionaly ... worried not worried at all angry at my body for not doing what i used to take for granted.
But sure enough i get back to positive.
I dont even know what fasilations are?
(sp)
The more i read here the more i cross off any posibility of als.
Everyone has been helpful here.
 

ysabel

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city
Thanks HelenL
I do feel welcome here which is very kind. Just my own self conciesnes.
I'm reading some of the stuff here and getting more understandings. Which is helpful. I just really hope there is an easy solution. Im even trying my best to force those muscles a bit more.
But not over doing it.
I just want to get out of the frozen stage and get what i need done to get better.
I dont even know what all are the signs and do not trust dr google either.
I just have to be more patient. Like i said im roller coasting emotionaly ... worried not worried at all angry at my body for not doing what i used to take for granted.
But sure enough i get back to positive.
I dont even know what fasilations are?
(sp)
The more i read here the more i cross off any posibility of als.
Everyone has been helpful here.
 

ysabel

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Learn about ALS
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usa
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city
Oops acidental double post can one be deleated please.
 
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