Muscle Building vs Muscle Wasting

[stvhck]

Forgive my ignorance on this question...I have researched this question and cannot find anything close to a definitive answer and want to get the opinions of those in this forum.

Can you build muscle after being diagnosed with any form of ALS? In other words for those worried about "symptoms" of something, if you have the ability to still grow lean muscle mass through exercise can you rule of ALS or MND?

I would assume if the nerve is damaged you can no longer feed the muscle to make it grow properly?

Thank you.

 

[Alyoop]

You would still be able to increase muscle mass in unaffected muscles, but eventually , with progression of the disease, that would become impossible.

People with early ALS often try to retain muscle in unaffected areas, by swimming, pt etc.

 

[stvhck]

Thank you or the reply Alyoop. I have been in this limbo state of no diagnosis of anything since Nov 2010. My main issue is fasiculations on calves (constant) and random muscle spasms all over. Recently the fasiculations have "spread" to both hands. It is amazing how you can begin seeing more symptoms when you start searching for them.

I asked the "muscle building" question because I want to get on with my life...I feel like if my body begins building muscle again in the gym, I must be clear of MND and I can LISTEN to my doctors.

Anyway, thanks again...God bless.

 

[Alyoop]

I have UMN weakness in my hips and now triceps. I exercise all my muscles by swimming and every night I have a thick rubber band that I do leg strengthening excersises . I walk as much as possible, but no matter what I do I cannot strengthen the affected muscles. I can swim a km using just my arms, but struggle on a gentle slope. If you have no weakness then I doubt that the twitches are anything but benign.
I am primarily undiagnosed, after 4 years trying to get an answer. A diagnosis no longer really matters.

Keep going to the gym. Your body would quickly tell you if something is wrong. I was busy at the gym when I started sensing somethingvwas not right. I could workout for an hour, but struggled to get up the stairs into the gym at the beginning. Then cramp started and stopped me from doing any running. It was all downhill from then. Now it's all uphill

 

[notme]

If the fasciculations are in the areas that you are 'concerned' with, but are able to build muscles--I'd certainly agree that MND is very unlikely. If we were to erroneously assume that fasciculations were the symptom of ALS--it would mean that those muscles were effected--and muscle growth in those muscles would no longer be possible.

The "error" being that fasciculations mean ALS--they really are quite common. I, too, am undiagnosed. But, no amount of exercise will bring the muscle back that is now gone in my hands. I don't know that I have ALS--but I do know that the fasciculations didn't start until after the muscles were notably weak-to the point I was unable to do simple household tasks with that hand that started it all. The ones in that hand were constant for months--but eventually stopped.

If you're building muscles in the areas with the fasciculation, ALS can pretty well be ruled out, luckily.

 

[stvhck]

Aly & Notme...thank you for your opinions? So you both have not had an actual diagnosis? While limbo is awful...it still allows for hope right?

I have an appointment with a neurologist at Cedars Sinai hospital in Los Angeles on Monday...this will be the 10th neurologist I have been to in 6 months. It's not that I doubt my doctors, I just need more concrete assurance than what they are suggesting, which is "I am too young to have ALS". I do not believe age eliminates someone from the possibility.

I went back to the gym for the first time in months...I still have strength, no problem lifting weights. My muscles did tire a little easier which is probably expected after a long period off. The only thing worrying me is now my tricep muscle in my right arm is spastic, almost to the point of a convulsion.

Not me- I know you suggested before that I may have some type of auto immune process happening in my body...that seems very legitimate based on some blood tests that came back with a high ANA and the way my muscles seem to spasm. I do have the fasiculations, bilateral in my calves. While they are constant there are periods of time where they are not as bad as others and I have had them now for 6 months with no weakness. Odd thing is that hot salt water seems to make them better as well.

Has anyone experienced high ANA levels or very harsh muscle spasms that seem "rhythmic"?

 

[rcharlton]

In addition to the helpful posts by Aly and Ptty, search "exercise " and you'll find a lot of posts on the subject.

 

[Alyoop]

I think if you have had the opinions of 10 doctors in 6 months, I am sure they are qualified to have put your mind at rest about you having ALS. Goog grief do you get time to do anything else except go to the doctor? Why don't you do what I have done.......take a year off doctor visits. It's incredibly good for your health to sometimes just forget about your health worries and go have some fun. I have had a great year traveling the world, rather than having needles stuck in me weekly( or so it seemed). My progression seemed to slow down, once I just let it go!

It's worth a try.

 

[stvhck]

Thanks Alyoop-

The docs say for sure "something" is wrong, they are just not sure what. The only abnormal blood work so far is a few CK tests were elevated and a few ANA tests were elevated, all of which are very non specific.

My persistence is not by choice...seeing these docs has been a nightmare and wrecking my life. My fear is that if this turns out to be autoimmune from the vaccine, I never want to hear the words "I could have fixed this if you came to me sooner" (or something to close to this lol).

 

[Alyoop]

I think you have covered that pretty well by going to 10 doctors. You really should just let time do it's thing now. Trust me it helps with the anxiety stuff. If the Drs thought it was treatable, then at least 1 of the 10 would have suggested something.
Limbo land is a hard place to be, but regardless of how hard it is to be patient, you just Have to be. Trust me it's been 4 years for me and I sleep with a neurologist every night. It frustrates the H.....out of him as well. He just says, let's keep traveling and enjoying life while we can. Great advice and good treatment as well. We are off again soon....UK here we come

 

[notme]

Your high ANA points away from ALS and makes auto immune much more likely.. If you can not take the suggestion of avoiding docs for a while, at least see a rheumy instead of a neuro.

 

[stvhck]

Notme-

I have been to 2 Rheumatologists...they too are "stumped". It seems like whatever is going on it is inflammation based (whether that is the nerves, muscles, joints, or all of the above). Checked for Lupus, RA, even checked my blood for "anti-myelin antibodies". Good news is all negative but still no clues.

The experts believe I had a reaction to the vaccine in combination with a recent Strep infection. For some reason my body is producing a lot of ASO antibodies (Strep). That for sure is more autoimmune from what they tell me.

Anyway, thank you both for all of your wisdom and input.

 

[trfogey]

I asked the "muscle building" question because I want to get on with my life...I feel like if my body begins building muscle again in the gym, I must be clear of MND and I can LISTEN to my doctors.

Once again, you are going about this exactly backwards. You don't need to build muscle to prove that your doctors are worth listening to. You should be asking them whether it is safe for you to go back to the gym and work out.

And, rather than worrying about "I could have fixed this if you came to me sooner", maybe you should think about "If you had asked me, I would have told you not to do it."

And if your doctors say you are clear of MND, you are clear of MND.