finally maybe some answers

[guzbud]

Hi all,
It all started about 6 months ago when I woke one morning with tight muscles in my groin area and it felt wrong to stand upright. over the coming weeks my muscles all over my body started to do funny things. I can't give it a name but it looks like the muscle actually rolls, or like it has a wave effect. It does this in my arms shoulders stomach, thighs, buttocks LOL, and I have also had sore palms . WHen it rolls it will normally do it about 3 or 4 times and stop. And it only seems to do this when i use a muscle that has been relaxed for about 30 seconds. For example, if I keep my arm bent for a good 30 seconds and then extend it my right bicep will roll from left to right across my arm 3 or 4 times. I have been to the doctor and nuro and thay are baffled, they say they've never seen anything like it,

Does anyone have a similar story or even know what the muscle motion is called in medical terms beacause it doesn't seem to be a twitch, or a tremor, or a spasm???

let me know

[jimercat]

Could be Benign Fasciculation Syndrome. Not ALS.

Have you had an EMG?

CJ

[ltr]

Sorry to hear about your troubles. I did a little research for you and found this...Have you ever heard of Rippling Muscle Disease? It effects mostly males and sounds a lot like your symptoms. Here is a link, but I recommend researching it better and going to a neuro. Good luck. Leslie


http://www.neurology.org/cgi/content/abstract/52/7/1453?ijkey=547cb72e96ca2e3364a2d5d1b21a6 23d4f7d6752

[ltr]

Annmarie, you make me blush!!! I want to give to this "community" the same caring it has given me, so I try. Thanks for being you. Leslie

[Jamiet]

Guzbud,

This not a twitch or a spasm. If it looks like "worms" or rolling, that's Myotonia or Neuromitonia (I think that's what' it's called). You likely have Isaacs Syndrome, the rippling muscle disease or something close, not ALS. The muscle reaction is clearly different than a twittch.

You need to see a specalist in neuromuscular diseases (at an ALS Clinic) and they will likely get to the bottom of this quick. You need to ahve a potassium gated sample done on your blood for Isaacs and it's relatives.

What you have is more than likley very fixable. YOu DON"T have ALS

rgds,

Jamie

[guzbud]

can I just say you are all lovely people and I hope the best for everyone. thanks for all the swift replies, I owe you all a great debt of gratitute.

thank you all soo much

[Jamiet]

No problem Guz bud....i like your name....are you a budweiser man...because we would get along great....i'm already crazy.....so a crazy drunk would be even better...lol..just joking...

Do me a favor....put a pen in the palm of your hand, cross ways, like perpendicular to your arm. Close your entire hand to grip the pen really hard, then, try to open it quickly, can you open it quickly???????

rgds,

jamie

[guzbud]

it doesn't seem to be any slower than normal. Anymore tests that was fun :-D

[ltr]

My doc had me open and close it ten times fast checking for Isaac's. I could do that fine too, but after using the hose for about 15 minutes, then I couldn't work my fingers very well after. Talk to your doc about rippling muscle disease, with your strange muscle symptoms that even the DOC's never saw before, I would bet it something in that category. Isaac's and the others don't really cause those kind of things. Good luck~Leslie