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Hi Flowerpot..you're funny. Was your post directed to me and CB1977? I do have a slightly smaller calf muscle on the ride leg..same one that twitches. That is what I am most worried about. I'm going to doc tomorrow.
 
the tremor in my arms when holding something is caused by weakness in the torso/trunk my pt said,i thought it was clonus.
also i found out recently that the collapsed arch in my left foot is caused by the hypotonia/loss of contraction in that leg.
my pt is full of info:D
 
Hi,

this thread got alot of responses in a short time!

I had this conversation with my als specialist last month. I told her that PT did not go well and I Felt no need to go untill we know what is going on and that the PT said I was abnormally weak. She said that she has that happen with PT alot and that they push harder and start with lower numbers so that the improvement is better. Sorry Cindy (ssyd), I dont really buy that, I think my neuro was saying that to explain my weakness.

She went on to say that she has went to some als conferences (she is also in research for als) that they had all these PT guys demostrating about how quick you could break someones hold or what ever and she felt that this was more of a test how strong the PT or Neuro is and not the patient. She trully feels that the tests they do will show 'clinical' weakness. I guess most of us dont have clinical weakness but we have weakness. Mine does alot more than my local nuero. She in addition to all the normal stuff has me open and close my hands untill I cant do it (not just 10x), lay on my back and hold just my neck up untill I cant do it, get on the ground and watches how I get up, has me roll over and shake my paw and bark....just seeing if you were still with me! all that and more.

What is interesting is the last time she took some grip strength measurments for me, I think she wanted to check them for her self. Mine was in the upper 40's, wich I was told is low. My nuero did not seem all that worried that it was low. I had my mom do it and hers was ALOT lower than mine! My mom is a wimp though! My neuro even did it for me and hers was about were mine was......unless she was trying to make me feel better, hmmm

anyways, I KNOW I am weaker. But I feel weaker pretty much all over these days. I have a hard time carring baby as long or cleaning. When I tickle my kids, my hands hurt. My feet hurt if I walk to much. If I shop and hold up a shirt, my arm burns. BUT, I can lift heavy things or move heavy things like once or twice. Not really heavy but heavy for a girl! I cant play tennis or do pilates, so That is weak! I told my neuro that my legs give out or knee's and ankles hurt. Her answer was 'wrap your knees and ankles'. OH, if it was that simple!

My husband is real nice (or sick of me asking if something is heavy) because he will always tell me if something is heavy. We got a new coffee pot and he said 'dont worry if you have problem with button because it is hard to do' or 'that pan is heavy' or ' I have a hard time carry the baby because she is soo big". God Love him!

ps, anyone bought that foil double sided wrapping paper from Costco? Well, that IS heavy! I can hardly hold with one hand and it has been confirmed to be the heaviest wrapping paper in the world by all my family!
 
My first neurologist was a tiny, asian looking woman that closely resembled the costume making lady on the the cartoon movie, "The Incredibles".

She is the one that labeled me with "Progressive Weakness". Strong little lady, she was!

Zaphoon
 
i supose clinical weakness is not what you feel but what the neuro can obviously see.
it may take some time /progression for what you feel to be visiable to others.
 
Wow..I guess we've all wondered about this.

My husband's weakness has only been in his legs which is the only place that he/I/trainer/pt's have seen atrophy (which could be explained by his spinal injury)...yet the als specialist said he has weakness in his upper body.

Curiously, as he was pushing and pulling on limbs on my husband's upper body...his feet were slipping out from under him and he was making "struggling" noises (the neuro is not a big guy).

We have SO MANY questions with this diagnosis...this being a big one.

How can so many of us who have known this man for years (including himself) NOT see any weakness in my husband's upper body..but this neuro who's only seen him for 1 hr 45 min total time tell us he has obvious weakness.....

We are almost feeling like they're trying to talk us into this diagnosis...

WEIRD!
 
Tag- That makes no sense to me either? Personally, I know that I will notice weakness way before my neuro will. If your husband doesnt detect any weakness in his upper body, I dont see how the neuro can by doing a clinical exam. I have had 3 of these clinical exams and often said to myself, if they find some type of weakness, then it would have to be very noticable and I would know going in to the exam that I had it. I do have weakness that I can clearly feel, in my legs, my shoulders, even the muscles in my face and neck. My neuro keeps telling me that I have no weakness that he can detect. It seems like we have the opposite problem going on :)

CB
 
Boy I sure stirred it up didn't I.:lol:

I have a local neuro appointment this afternoon. I'm going to grill him on this question among others and report back. He is a general neuro so it will be interesting to hear.

By the way, this guy is not good looking ladies. Of course, I've never seen a guy that is except me.:lol::lol::lol:
 
before your grilling of the neuro.................you will have to try and fit your head through the door first jeff:lol:
 
OMG, I don't know what it is about this forum lately but I am laughing my a@@ off every time I log on...(wait...or am I just demonstrating increased inappropriate emotional responses? and isn't that a UMN sign...?! Shoot, gotta put that on my list! :lol:)

Lydia
 
If you take any credence in the work of Norman Cousins, then some of the threads on this forum can cure just about anything :)

Robert
 
Hey Robert- thanks for the kudos about OT's and PT's. We, too do manual muscle testing, but that is not our only tool to evaluate progress and we realize that it is VERY subjective.

SOME neuros may not pick up weakness if all they are doing is manual muscle testing until you get to the point that you are really quite weak and connot resist them- or hold your joint against gravity.

We do have pinch and grip tests through special tools that evaluate pounds of grip and three tests for pinch strength. These tools are very valuable.

We also measure endurance by amount of repititions you can endure, amount of minutes on certain things- amount of pounds on others. We evaluate how much exertion you can handle before becomming short of breath, etc.

But the most meaningful part of it all i sknowing how strength/ lack of impacts your daily life. These are things I would mention at a Dr. or neuro visit. " I know you say my muscles are good, but why is it then- that I can no longer lift a gallon of milk?" " I know my balance test went well, but why do I now have to sit or lean to put my pants on?" I think letting them know how much things are impacting your daily activities are a true testament to what you are experiencing and also puts YOU in the drivers seat. BE YOUR OWN BEST ADVOCATE!

Love,
Cindy
 
cindy-
thanks so much for that - I need to remember that even though I APPEAR to be pretty strong, there are certain activities of daily living that I have to ask for assistance with. Nothing too personal yet, just the occasional asking the spouse to fasten the bra strap!:roll:
No jokes guys, that was a thread a month or so ago!:lol:
thanks again cindy,
brenda
 
OK, I think I've got it. Clinical weakness is weakness that doesn't show up at the CLINIC. Sorry guys, the Grinch made me say that. Just had to. Read some of the posts. It does make you wonder.

AL.
 
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