Time of day?PALS/CALS

[sdsyd]

I have a question specifically for PALS/CALS.

My diagnosis is still possible MG and suspect MND. A few more days and I will have lab results! (anti-Musk test can take up to 21 days)

When I first wake up, I am a bit sitff. After 3 cups of coffee I feel really= pretty darned good- considering! My walking is still sower than pre-sickness, but not too bad, except for stairs. My left hand ( I call it a deformity) is obviously there always. Naughty musle twictchies are almost always present.

By 11:00 in the afternoon or so I start a downhill slide with energy and by the end of the day my feet feel heavy and knees feel like twigs and walking difficulty is much more pronounced and everything takes more effort. Cramping is there after prolonged standing/ and after activity with my hands during the day. Evening and NIGHTS are the absolute worst with cramps in hands/forearms and arches of feet.

My question is with ALS- do symptoms get worse as the day goes on? I'm thinking these symptoms were ballots they fit very nicely in the MG "box".

Your answers appreciated VERY MUCH!

Cindy

 

[msde302]

Cindy-

My mom was a PALS. By the time I was living with her full time she was using a wheelchair. However, throughout her battle, she seemed to have the same waves as you. She was always very stiff in the morning (perhaps because she wasn't able to move around too much), and her breathing was always more labored in the morning. She perked up after a latte or two (don't we all!) and had more dexterity. Toward the end of the day she was exhausted, in many ways because her bum hurt from sitting all day. Of course, in terms of how this fits into one diagnosis or another, I'm not sure. I could probably say I fit into that pattern!

So, as I conclude the message, I realize I've been of no help! :-S

Kaija

 

[tmasters]

Cindy,

I really wear out by the end of the day if I overdo it. So I don't. I used to take the stairs at work 'cause I'm too impatient to wait for the elevator. Now I wait, and I feel much better at the end of the day. Stuff like that. You really have to pace yourself and try to preserve your energy.

Hope you have MG.

-Tom

 

[BethU]

Hi, Cindy ...

My "symptoms" (speech/swallowing/hand weakness) don't get worse as the day wears on, but I crash energy-wise by 3 every afternoon, and have to simply rest ... lie down and read, take a nap, watch the news. Usually by 3 I'm done for the day, except for getting dinner for hubby. (My eyesight does get worse in the evening ... double vision while reading ... but I don't think that's connected to ALS.)

Fingers crossed for MG!
BethU

 

[awieleba]

hey cindy,

you said 11 in the afternoon, I love it! 11 is still the morning in my book! I dont have a diagnosed but I wake with a stiff feeling in my thumb and finger with feet. I rub my feet together every morning and I NEVER did that before, although 2 of my sisters have always done this. What do you mean by funky thumb?

take care

 

[sdsyd]

I dont remember saying anything about a funky thumb, but it is. When doingsomething functional my hand literally looks like a claw. Thefingers are stiff and curled ( I used them to grab things) the thumb is pulled in toward my hand at the base and the rest of the thumb sticks out like a bent banana? LOL When I grab thingsmy thumb caves in. I dunno how else to explain it. Maybe I should post a pic? LOL

 

[awieleba]

did you have an ncv/emg on that hand? was it just like that one day or had you noticed weakness?
I have the beging of a funky finger, the pointer. It is thinner from middle knuckel to top and turning in a little. Those same fingers on both sides ache and hurt alot. I can still move it and they dont curl but it is wierd.
Hey, I took picture of my hand yesturday. more the palm and b/w thumb and finger. (pincher grip) To see if it gets worse. I would be too afraid to post the pic, I dont want anyone to say that it does look like atrophy, I Know it is not good and looks different from everyone I have compared to. I have a clean emg and ncv on both hands. It is strange, I guess we will see what happens at my next emg.

 

[sdsyd]

April- no. I first noticed a tremor before I noticed weakness. Because my job is very physical in nature , it would take me alot to notice weakness in an intrinsic muscle of my hand. ( a small one) Over the course of a year, it "deformed" one muscle at a time.
I didnt notice weakness until my forearm was affected.

 

[awieleba]

cindy~ is that because the muscle in the forearms can move the hand? sometimes when I am on the computer typing alot, my forearms hurt! My sister has carpul tunnel and said this is what happens with her.

 

[sdsyd]

Alright girl- you gotta google hand anatomy or google that with kinesiology or which muscles perform which actions? Muscles have a point at which they begin and end. A nerve "innervates" the muscles.

There are many muscles you can "compensate" with, without even knowing you are doing it. You're gonna be a genius when you're done with all this research! LOL

Carpal tunnel often causes pain with typing or prolonged activity, as well as tingling and a feeling you can "shake it out",weakness, cramping etc.

Yes, the muscles in the forearm control much of the action of your wrist.

My EMG was not thorough. They found a problem with the thenar muscle and ulnar nerve compound action potential . They also found a fasiculation in my foot.
(they stuck me 4 places in my lower leg/foot)
They considered it a relatively normal EMG. According to my Dr. they should have EMG'd me head to toe.


Mayo Dr. Diagnosed it as left hand dysfunction of unknown etiology and went on to explain all of the muscles affected by it as well as the deformity.

Pernicious anemia causing the other weakness. My Dr. explained to me that for whatever reason (too young, doc too busy? not enough signs/symptoms) to do enough investigation. It's just one of those things.

God is teaching me a very important lesson in patience. I welcome the instruction.