need some help

[mjk201]

okay it's been awhile since i've been on here. i'm still the same weight i was last time i was on the forum which is 300 even. what i wanna know is my arms and legs are getting skinny and they just don't look the same to me. so i have twitching once and awhile and it's in different spots but not long. i've already have had blood tests taken and been tested for thyroid and antibodies. both came back normal and i also had a mri and an x-ray of my left knee. and later today i'm having a ct scan of my lumbar spine. what i wanna know is can my lumbar or my spine have anything to do with my arms and legs getting skinny. as i said in another post i don't know if i have atrophy but i have no cramping of my legs or my arms or my fingers. i can still lift weights the same and do everyday things. the only problem i'm having is walking alot other then that i studer sometimes but thats because i always talk to fast and i have no swallowing problems. just would like to know what it could be. and with atrophy wouldn't you lose weight if your muscles are dying? only asking because i read they will only say you have atrophy if there is weakness which i don't have. thank for your time and godbless. mike

 

[wright]

If you think you have atrophy, but your strength is unchanged, then you don't truly have "ALS" atrophy. Most of the atrophy associated with ALS is due to denervation, which would also cause weakness. The weakness would actually precede the atrophy; it takes a little longer for the muscle fibers to atrophy after denervation, than it takes for the denervation to cause weakness (the weakness is pretty much immediate).

It sounds like you're losing weight and you're losing it more in your limbs than other places of your body.

Do you have more symptoms (other than a few random twitches) that are causing your physicians to do so many tests?

 

[awieleba]

Hi mike!

I would THINK you would lose wieght with muscle loss, as muscle wieghs more than fat.
I am no expert and in the same boat as you. MY legs and arms have thinned out, but, i have also lost 35pnds. (thats alot since I am only 120-130lbs) and 10 was in one week.

Have your doctor check your cortisol (cushings disease can cause thinning arm & legs with rounding in middle). MY doctor is checking that for me. your lack of weakness is a good sign. I feel weak and miss playing tennis! but I save every bit of energy for my 3 kids and it is worth it.

Have you had an emg?

Take care,

april

 

[mjk201]

If you think you have atrophy, but your strength is unchanged, then you don't truly have "ALS" atrophy. Most of the atrophy associated with ALS is due to denervation, which would also cause weakness. The weakness would actually precede the atrophy; it takes a little longer for the muscle fibers to atrophy after denervation, than it takes for the denervation to cause weakness (the weakness is pretty much immediate).

It sounds like you're losing weight and you're losing it more in your limbs than other places of your body.

Do you have more symptoms (other than a few random twitches) that are causing your physicians to do so many tests?

not that i'm aware of at the moment. i've always had back problems so that is the only real weakness i have. i mean it hurts but doesn't stop me from doing anything really. well it started with my left leg and i went to my primary doctor and she sent me to a ortho to see why my leg was acting up. he said it wasn't swollen but the muscle around my outer calve was solid even without flexing it. so they did the mri and nothing was wrong so that's why they did the ct scan of my lumbar because they said there's no reason that should be happening. but the only reason i asked is because since the thing with my leg everything else has followed.

 

[mjk201]

Hi mike!

I would THINK you would lose wieght with muscle loss, as muscle wieghs more than fat.
I am no expert and in the same boat as you. MY legs and arms have thinned out, but, i have also lost 35pnds. (thats alot since I am only 120-130lbs) and 10 was in one week.

Have your doctor check your cortisol (cushings disease can cause thinning arm & legs with rounding in middle). MY doctor is checking that for me. your lack of weakness is a good sign. I feel weak and miss playing tennis! but I save every bit of energy for my 3 kids and it is worth it.

Have you had an emg?

Take care,

april

i lost about 10 ponds but gained it back since then. i also have 3 kids two sons that are 3 and 5 and a 8 month year old daughter. i just turned 29 so i have alot on my plate and this is the last thing i need. all 3 kids have health coverage. but i don't so everything is out of pocket. nueros around me are 600 and up for the visit and with 3 kids it's hard. i've already had mri's and ct scan's and ultrasounds and blood work out the wazoo. so i'm just taking the steps with my docs to see whats going on.

 

[awieleba]

Hi!
2 boys and a baby girl, isnt it great! Our new little girl is sooo sweet (not that the boys are not). she has been real good with sleeping through the night and playing-not alot crying. THis is a real blessing since I have been sick since she was 1 month old. (it could be worse after reading what some are going through)

Insurance is a tough one! We are self employed (in the mortgage business, so take a guess how well things are for us in michigan with economy and big 3 closing plants! half my friends have moved out of state!) and pay for our own insurance, 80/20 and no vision or dental. that still is over a $1,000 a month. It is worth it now! I have had every test and I was in the hosp. 3x within 2 months in the spring! We still get alot of co pays and such and the all the kids appt., needless to say my husband is sick of seeing medical bills!

things started with me in the left calf while i was preg., now my whole leg gets stiff feeling. I can walk and take care of kids, I just get tired (muscles). I am having an mri on my lumbar so will see--I know there will be nothing there.:?

Well, keep me posted and I wish you the best! It is hard with 3 little ones. I agree, this is the last thing that I need! I just try to enjoy each day at a time and thank god that I had today and i CAN still move about. I miss tennis, but need all that energy for kids---you know how that goes with3!

god bless YOU!

april

 

[Sammantha]

You have never noticed any weakness? I had weak shoulders for a long time and no matter how much i excersized them they never developed. Then my deltoids, pelvic and leg muscles had weakness.. All of this way before the spasms started. Once the spasms started they were intense and lasted for months... When they died down i could not ride a bike for more than ten minutes. I started developing twitching constantly and after a few months of that i was able to ride my bike again. But the harder i worked the more fatigue, then spasms, twitching, and the weakness would get worse and slowly permanent. The actual visual changes of atrophy happened lastly. I permanently lost seven pounds which is not that much really... I say permanently because i fluctuate between 125 and 130 depending on if my gallbladder is acting up! Before the visual muscle wasting started i was 140. Also isn't it normal to have muscle wasting when you are obese? I lay around a lot and have been watching those shows where people get treatment for obesity. They are actually doubley weak because there body mass is huge but their muscles have wasted and are small..... The good thing about that is excersize can build them back up... With ALS heavy excersize makes you weaker and exhuasted. I have not been diagnosed but i know after a day of swimming or watching my friends baby i feel like my body weighs five hundred pounds, every movement is heavy, people say are you tired and i say No, i am just getting slow i guess. When i see the people that are in treatment centers for obesity i say that is exactly how i feel when i have to move around after a normal high physical day... What most people consider easy physical activity is really a big deal for me!