Has Anyone Else Experienced This?

[Mountainview]

When I lay down to sleep at night my whole body just starts to shake, that is the muscles just start to be really active. This is happening nightly whereas it was just a couple times a week when it first began in May. I don't sleep well. Did anyone have this as part of their initial symptoms.

Overall, I've lost some muscle mass everywhere (just aging?) though nothing that would be considered atrophy. I had posted previously that my right foot is weaker, and tongue has had recent problem.

MV

 

[Eponine]

Hello,

My dad has ALS and recently has been having a problem with this. He has lost the movement in both arms and legas are very, very weak. He can bearly walk 1 foot.

For him, his legs will shake throughout the day ranging anywhere from a few seconds to 30 seconds. The other night, when lying down, his whole body was shaking. He was very active that day (in and out of the car, etc) and I think that plays into the shaking.

The last couple of days he is back to his old routine and the shaking is not as severe. I have no clue why it does this.

If anyone has any info, I would greatly appreciate it.

Thanks!

 

[Teej]

The doctors told us, it was muscle fatigue. My husband mainly gets that shaking in his jaw area. They told us when an area gets very fatigued, sometimes you will get that shaking. They keep reiterating to us, that the key is conserving, conserving, conserving your energy. You are not trying to build muscle or gain stamina, you are trying to conserve every last ounce of strength, so make sure that your actitivities reflect that, and don't expend energy on things that are not important...save it for family events, trips, etc. When my husband finally heeded this, (and believe me, it was tough to give up his beloved gardening and putzing around the house), his progress slowed significantly. Blessings to you and my prayers are with you all! Teej

 

[Mountainview]

I am current'y not diagnosed. I see a neuro in three weeks, and if the symptoms are any indication it appears I may have ALS.

 

[Chad]

Don't hit the panic button yet. Go to your neuro appointment, take the tests, and they'll give you the results. It could be any of a number of disorders or some natural phenomena that you're going through right now. Keep the faith!

 

[CindyM]

Hello MV. I like your nickname. What part of the country are you in that you chose such a descriptive sign-in? Regarding your question, I experienced this shaking too. The Drs said it was muscle weakness that caused it. It's not bad if I rest and take it easy. The question is: why are we so weak?

Apparently it takes a long time to fully diagnose this condition. I hope your appointment goes well. I, too, am awaiting results from recent tests (spinal tap) and we're holding out hope that the results will be some sort of obscure condition that doesn't cause much damage. I wish the same for you!

If your suspicions prove correct, though, you've landed in a good spot on the web. the folks here are knowlegable and helpful. Al says that some members have been going in and our of remission for years.

I'm wishing the best for you. Have you met the nerologist and do you like him or her?

 

[Mountainview]

Hi Cindy,

Thanks for the support. I hope everything goes well with you.

I had enjoyed always hiking in the mountains out west, though here in New England we have some and perhaps its good they are not as high so I can still maybe hike these.

I have met this neuro once before - he is at Mass General. He is more the research type, than clinical so I wonder about his ability to interpret the clinical exam. However, if things are obvious or not than he should be able to make a call. Hopefully the biomarker studies will lead to some sort of blood test in the future.

I am hoping for at least some drugs that can at least decrease the shaking so I can sleep better, and cross other bridge if and when they come up.

MV

 

[CindyM]

Hey MV. I'm here in New england, too. And this week our daughter and two grandchildren are visiting from the Rockies. I know what you mean about the research types VS doctors with experience. Two local doctors (We're in southeastern MA) suspect ALS with me but the dr at Beth Israel was leaning towards MS. Now, since the MRI didn't pick up evidence of MS, he's kind of quiet. I told Lee, my husband, that it is like this: do we go along with the guys who've had over 50 years of experience between them or the smart young rookie affiliated with Harvard. Maybe we should toss a coin. LOL.

Anyway, keep hopeful. I have decided, for myself, to prepare for the worst but hope for the best. And, for me, I have gotten used to the symptoms. I've stopped wishing things could be as they once were. That's not to say I don't have real bouts of sadness. Yesterday we took my grandson to the same farm stand we took the girls when they were little. They were excited, all full of memories and happy to watch Nathan make memories of his own, but every once and awhile the reality would hit me. I sometimes had to fight back tears. Next fall, will I be able to go along in my wheelchair?

Keep in touch. Smarter folks than us have managed this condition with grace and humour right up until the end of their days. I went to the library and found several books written my people who suffered from ALS and got a few pointers there. Plus the folks on this forum are great!